I would have never written this article if it wasn’t for all the emails I received in the last years about my Thalassemia. Thank you for everyone who emailed me and entrusted me with their (often) personal story. I feel honored to receive these type of emails, but also a bit nervous to write about it now. I’m not a doctor or a specialist and I really don’t know everything about Thalasemmia minor. What I do know is only a result of my own research and after visiting many specialists (hematologists) throughout my life, because I’m curious and don’t settle for simple answers. I’m also writing this article to create more awareness for this topic as there is not much information out there and doctors don’t really seem to know how to advise their patients who are having tons of questions. The questions I have received so far (just by mentioning Thalassemia on my about page) are mostly about how to get more energy, how to live a healthy life with Thalassemia, what to avoid and how I ”do it” on a plant-based diet. In this article I will explain how I live my life with Thalassemia minor on a plant-based diet. I hope my story can help others or at least raise some awereness for Thalassemia.
Disclaimer: this is about my story, my body and my experiences. Ok, let’s begin.
Wat is Thalassemia minor?
A brief summary of Thalassemia is a lifelong diagnosis of anemia. In this article I’m not going to discuss all types of Thalassemia, but it’s good to know that there are different types of Thalassemia that all have a different impact. Very briefly described (for me with Thalassemia minor) this means that I was born with a lifelong diagnosis of anemia that can’t be solved like other ”non-Thalassemia” types of anemia with for example iron supplements.
Thalassemie minor means that you don’t have well-formed red blood cells and so you logically have a shortage of healthy red blood cells. The task of healthy red blood cells is to transport nutrients in the body. If your red blood cells are small and deformed, you are not able to absorb nutrients like a healthy person in the same way or in the same quantities. It’s also more difficult for your red blood cells to transport enough oxygen to your organs, which makes you feel tired.
There is also a much more severe form of Thalassemia and that is Thalassemia major. That’s a totally different ball game and I don’t have that. Within Thalassemia minor you have alpha and beta, but in order to keep this article somewhat clear I will only discuss my life with Thalasamia minor.
In practice this means that I will always be a bit more tired and more pale than the average woman of my age (hello forever dark circles under my eyes). Thalassemia is an inherited blood disorder that causes my blood (hemoglobin) to produce insufficient and abnormal blood (= hemoglobinopathy). Hemoglobin is the oxygen-carrying component of our red blood cells. It consists of two different proteins, alpha and beta. If the body doesn’t produce enough of one of these two proteins, the red blood cells are insufficiently formed and therefore will not be able to transport enough oxygen in the body since hemoglobin is an iron-rich protein that normally transports oxygen to all parts of the body.
Thalassemia patients are born with the disease and there is no cure for it. Thalassemia is not contagious like HIV, but a woman can transfer Thalassemia to her child during her pregnancy. Millions of people worldwide suffer from Thalassemia. Alpha Thalassemia mainly occurs in families that have their roots in South East Asia, India, China or the Philippines. Beta Thalassemia occurs mainly in patients from areas around the Mediterranean Sea (Greece, Italy and the Middle East) or of Asian or African origin.
I was diagnosed at a fairly young age. As a baby I was pale and tired and after a blood test the result was that I was anemic. I was prescribed iron supplements and almost immediately fell ill. Fortunately, my doctor at that time discovered that I had Thalassemia minor and that’s how my father found out as an adult that he was the carrier. He never really had any symptoms, but I once read that women suffer more from Thalassemia because of their menstruation. I have never ever taken any iron supplements after that because I know that it will not cure Thalassemia (more on that later).
Furthermore, I was told that this is my DNA, it can’t be cured, I can become 100 years old with it, I won’t notice anything of this blood disorder since I was born with it and I will not be limited in my daily life. You can’t miss what you never had, the doctor said.
Anemia, lifelong anemia. For me personally this is the best way to describe Thalassemia. However, the symptoms of Thalassemia can vary greatly from person to person. During different periods in my life, I had more or no symptoms at all. Some people really only experience mild issues, others much more. Sometimes the symptoms are tiredness and overall weakness. Sometimes I feel great. Sometimes I’m very pale, although I feel fine. I will always have dark circles under my eyes though, no matter how good I feel and sleep. Sometimes I’m a bit lightheaded. Overall this is how I can sum up my symptoms and I don’t know any better. I’m not limited (and don’t limit myself) in my daily life by Thalassemia minor.
However, if I don’t take care of myself I can have more problems with my Thalassemia minor or actually a symptom of it, the anemia. By that I mean that I’ll feel a bit more tired and I’ll look more pale. I don’t have to stay at home or adjust my life for that anymore though (like I had to in the past). If I had a lot of problems with my anemia I would not only feel tired, but I would also be short of breath, weakened, I would faint easily, have muscle pain, cramps and I would be more thirsty. The real symptoms are for the patients with Thalassemia major. Again, that is a whole different ball game. Nonetheless, Thalassemia minor can also be kind of a pain. Especially when I was younger and wanted to join the rest of the world and the ”normal” people around me and for example wanted to go out night after night… Thalassemia minor is then not that much fun.
It’s good to note that chest tightness, hyperventilation, a panicky / nervous feeling and even depression can also be a symptom or rather a result of Thalassemia. I have suffered from hyperventilation for a long time, but if you have anemia it can be difficult to make a distinction here. The symptoms may look alike.
Other symptoms that I don’t (hardly) experience anymore are: dull feeling / tingling in the limbs, hair loss, dark urine, thyroid problems, weakened immune system, feeling cold and lightheaded.
I have never had anemia in my life because of an iron deficiency (or even had such thing as an iron deficiency) and luckily I have never taken unnecessarily iron supplements ever again. When doing a routine blood test I mention I have Thalassemia though or I’ll get a phone call that I have anemia and need iron supplements (even if my iron levels are good!). The danger of taking iron supplements if you don’t have an iron deficiency is an overload of iron in the blood and this is, for example, such a pain with the more serious Thalassemia major. Due to many blood transfusions in major patients an iron accumulation can occur. The body can’t get rid of too much iron and the iron quickly accumulates in the already small / deformed red blood cells which can lead to serious complications. I’ll say it again … Thalassemia major is completely different. But also with Thalassemia minor, iron supplements will not help if the anemia is caused by Thalassemia and if there is no iron deficiency.
I was told that Thalassemia major patients died at a relatively young age due to the complications of chronic blood transfusions (especially iron accumulation in the liver and the heart), but this was already quite some years ago. After the introduction and improvement of so-called ”anti-iron therapies” (chelation therapy), the prognosis for Thalassemia major patients has improved significantly.
I often receive emails from readers asking why they don’t feel any better after taking iron supplements. It’s important to understand what causes your anemia. Do the necessary blood tests. Do you have an iron deficiency? As you often see in a mild Thalasmia, doctors sometimes confuse the small red blood cells as a sign of anemia due to iron deficiency and incorrectly prescribe iron supplements. The decision to take iron supplements because you have anemia caused by Thalassemia is something you should discuss with your doctor and not something you should decide yourself.
My life with Thalassemia minor
Thalassemia is not curable, but I remember my mother was doing a lot of research to look for something to give me a little bit more energy. As a child, I had much more problems with anemia than now.
For example, for years I have been drinking Floradix (it’s also available as a supplement) with the hope that this would make me feel stronger. It’s a natural iron supplement that should support the body when feeling fatigued. It’s made from natural plants and fruit juices with some vitamins. I can’t really say that this helped.
In addition, since the diagnosis of Thalassemia as a baby, for decades I have been taking high doses of folic acid (only available per doctor prescription). I was always very precise with this and never skipped a day. At the moment I stopped (temporary) taking high doses of folic acid.
My life with Thalassemia minor on a plant-based-diet
A lot has changed after all those years. I’m older now and know my body much better. I have been eating quite unhealthy during my years at high school and as a student. I also got infected with a heavy Epstein barr virus (Pfeiffer) and that was of course not very helpful. As a child and student, I was often ill. Tired, dizzy, weakened, depressed and I caught every virus that was going around. On some days I would feel totally drained. I have tried a lot, but what I do now works best for me. I decided it was time to look further and look for answers as to how I could physically feel better with the body and blood I have. I started to focus on unprocessed whole plant-based foods after I already was a vegetarian for some years. I haven’t visited a doctor for a while now, but the last time I mentioned my diet the answer was a bit remarkable. He said: “On paper, this is a tricky diet for your blood. Meat should always be a part of your diet, but since you feel so good and your blood results are pretty good (the severe anemia has improved) my advice is: continue with this”. This gave me the impression that my doctor doesn’t really know what a good advice is for people like me. I have never doubted or stepped away from my diet ever since. However, I wanted to know what Thalassemia minor really is and if there is anything I need to take into consideration. As such I have visited a few hematologists to get a better understanding of Thalassemia minor. This has led to my current lifestyle and the knowledge that I have at the moment.
This is what helps me, what tips I have received and the advice I have collected from specialists (hematologists) over the years:
I’m absolutely convinced that diet plays an important role in Thalassemia. However, it can be tempting to just not care about nutrition when you have Thalassemia. An overwhelming feeling arises easily where you think: I’ll have this forever so I can’t do much about it. However, especially with Thalassemia, living a healthy life is important. There is less room to make unhealthy choices without noticing. Nonetheless, the tiredness and often associated thoughts can make you reach out very quickly for something sweet to feel better, to eat it away or to get a boost of energy (even if this is counterproductive). But because I have Thalassemia and have tried for years to deal with this the unhealthy way, I know that healthy eating makes a world of a difference. Especially with Thalassemia it’s important to build up a good immune system and to get enough vitamins and minerals in your diet. The dietitians and specialists I visited recommended me to eat meat and that was actually the only advice I ever got. This advice never helped me though.
I now pay attention to my diet that is completely whole food plant-based, with a variety of fresh food, I avoid coffee and alcohol and listen to what my body needs. I also make sure that I don’t stress too much or too long. This also applies to my diet … When I eat a vegan cake, I make sure to enjoy it and I don’t feel guilty about it. I also don’t notice that my body is suddenly much more tired. It’s about the overall picture and not about the treat every now and then.
Juices rich in red beets and spinach give me a lot of energy. But also here the same applies: an occasional juice makes no difference, but a routine does.
Gluten & sugar
I know I don’t respond very well to gluten. I can eat it, but after a certain number of times there seems to be a turning point where I need to pay the price. A sugar addiction is also something I’ve struggled with for years. It was an ideal way to mentally and physically get through a certain moment of the day when I would feel sluggish or tired. Someone else might be more likely to grab some coffee or any other stimulating drink to feel better. It’s tempting and easy, but it doesn’t work in the long run.
My GP always told me that meat is my best friend. I never understood this very well. When I asked why the answer was: iron. The thing is that I never had an iron deficiency and I always made sure to get enough iron from other foods in my diet, because yes it’s certainly a good thing to pay attention to your iron intake if you have Thalassemia. In my case, I was advised to eat a lot of meat, such as liver and steak. And I did so for many years, without ever noticing a difference in how I felt or in my blood results. At that time, I was already not a fan of meat at all and I ate it because I had to. My mother often made liver at that time and I remember that I had to force myself to swallow it. Fortunately, there are also other sources of iron. Eating meat is not the only way to supply the body with iron although iron found in meat is easier to absorb by the body.
When I started following a whole food plant-based diet, I luckily noticed a difference. The longer I was eating like this, the better I started to feel. It never made a difference to my body whether I was eating meat or not. I’m not implying that this approach works for everyone and a vegan/vegetarian diet is therefore not a general rule to feel good under this blood condition, but a lot of fresh unprocessed products with lots of vitamins, minerals, enzymes and fibers is what worked for me.
Every day I drink 3 liters (0.80 gallon) of water. This may sound like a lot of water to some, but it helps me tremendously. I may be a little more thirsty than the average person, but I have slowly worked myself up to this amount. Water contains oxygen and it helps the red blood cells to transport nutrients. I once lived on two small glasses of water a day and I literally ended up in the hospital because I felt so extremely bad. I just need a lot of water and I’m grateful that a specialist once told me this. Because of my water intake I feel more energetic and I’m not short of breath. Especially in the morning I really flourish after my first liter of water. It makes a world of a difference.
Wheatgrass is an important addition to my diet, in any form: freshly squeezed, as a powder, or as a pill …. It seems that it’s very good for the hemoglobin values. Even Thalassemia major patients who drank 100 ml of fresh wheat grass juice a day noticed benefits. Me too, so I take this as often as I can. I must honestly say that sometimes I’m a bit lazy so I take the pill or powder instead. It increases my resistance and gives me energy. Recently I’m also using chlorophyll for the same reasons.
A Medjool date a day also helps me when I want to feel a bit more energetic without having to reach out for a vegan chocolate bar. It’s a natural source of sugar and energy and it also contains some fibers, minerals and vitamins.
Good to know
I have been told by all specialists that a pregnancy is the most normal thing in the world for Thalassemia minor patients (I don’t know if this is also the case for Thalassemia major). You will of course need to inform your gynecologist and doctor so they can keep an eye on you with blood tests to be able to intervene if your anemia becomes too severe. A home birth is not recommended since there can always be complications such as too much blood loss. Therefore, giving birth in a hospital with a doctor is the best option.
If your relationship with your partner is becoming more serious, it might be useful to know whether the other person also has Thalassemia (major or minor). This is not a very romantic question and I pesonally only decided to get my husband tested after two years of marriage, but only because he looks nothing like someone with Thalassemia (quite the opposite!). Nevertheless, a test is the only way to figure it out and be certain. Because although Thalassemia is not transmittable betweet people, if you ever decide to have a child with your partner you’ll really need to know whether your significant other also has Thalassemia (even if she/he feels fine). Having the wish to become pregnant is no problem if only one partner has Thalassemia, but if both partners have Thalassemia there is a significant chance that the child will be born with Thalassemia major even if you both have minor. I don’t know how this can be solved/prevented nowadays, because my partner has no Thalassemia so I never had to worry about this or dig further into it this topic.
I have also been told by specialists that I can’t go climb up a mountain. I was told that climbing every high mountain was considered not to be safe, but I was never given any specific information as to which height (I think this can be different for each and every person). If you have Thalassemia you have less oxygen in your blood, which can be quite a problem at high altitudes when there is also little oxygen in the air. This was a bit exciting during certain holidays such as in Switzerland. I’m not taking any big risks and just don’t go up too high. If I go up any mountain, I won’t be climbing it for hours. Fortunately, I also don’t feel the need to do this. Another specialist told me that I can go up a mountain, but not walk for hours/get my heart rate up. I’m not going to try it out and I’m fine with this restriction. If you do want to climb a mountain, I think there is a precautionary framework that you can discuss with your doctor to make this possible.
Funny fact is that many people with Thalassemia have a low heat tolerance and often feel cold (cold hands and feet). I personally don’t like hot temperatures, since it makes me feel nervous/restless. So tanning in the sun is not something that I do or enjoy. I prefer a seat in the shade with my cold hands haha.
This is a tricky issue. Doctors are quick to say that all symptoms are normal and that you have to accept it or that you can’t actually notice any symptoms because you were born with the fatigue (anemia) and you simply don’t know any better. I can agree with this if the fatigue is not too bad. After all, I indeed don’t know any better, but if the fatigue is getting worse than I definitely will notice it. Especially when I was in my twenties I suffered from the fatigue, but perhaps also because I had to deal with the aftermath of a severe Epstein-Barr virus. Staying in bed was not an option and also didn’t help me either. The fatigue is not a sleepy fatigue, but an overall fatigue. It’s quite difficult to explain. The fatigue will be there every day, so you have to push yourself to find the energy for (often) simple everyday tasks. Discipline and determination are then important. In those periods it’s even more important to find the time and energy to cook a healthy meal and to go for a walk instead of staying at home on the couch. Accept it and don’t worry too much if you fail though. Listen to your body. Rest and acceptance is the only thing that helps. For one peson this may include more sleep and for the other this will mean extra time to relax. If you know for example that the fatigue is worst in the morning and you have difficulties to get going, try to organize your morning in such a way that you have time to prepare for the day. Know where your weakness is and try to adjust your life accordingly.
Just like many other health problems, Thalassemia is also affected by stress. I have certainly noticed a link between increased stress and fatigue, but who doesn’t? It’s difficult to indicate to what extent this plays a role with fatigue since I never knew any better, but I do notice that after a stressful period I feel the need to take it a bit more easy.
Working out or doing any type of movement at all is probably the last thing on your mind when you feel tired, but it’s important. Listen to your body and push yourself mentally if necessary but also take a step back if necessary. Plan an easy day. Walk instead of jog. Take a nap. Taking it easy is really not the end of the world and I usually feel so much better afterwards! Especially because I no longer feel guilty about it. Just to give you a bettter picture: I take about 4 times a year an ”emergency ”afternoon nap haha. But I no longer feel guilty about it as I did before.
I don’t do things that exhaust me too much. You probably won’t see me doing Crossfit any day, but I do work out 6 times a week in my own way. But everyone is different. A specialist once told me that I’m not a suitable candidate for endurance sports, but that is exactly what I love to do and what I’m good at. So I think this approach is different for everyone and you’ll need to try out which activity makes you happy and what you love to do.
Don’t be too hard on yourself
The fatigue is different for everyone, but it’s there. So don’t be too hard on yourself. Many people feel depressed and incapable when the symptoms are bad. If you often feel tired, it’s quite a normal thing that you don’t feel great about yourself. You feel that you fail or that you can’t join society at the same pace as others do. You feel lazy and not productive and for some people this even leads to depression. I only suffered from this if I was too hard on myself. It just doesn’t work if you fight yourself or if you expect too much from yourself. I remember that in high school I noticed very soon that I couldn’t party night after night without feeling the effects of it days afterwards. Instead of pushing myself, I accepted it. I’m happy and grateful for my body and what it can do. Nobody (and no body) is perfect and everyone is physically different. It also helps to reflect on the fact that there are much worse diseases and that it only leads to disappointments if you keep comparing yourself to ”normal” people. Ok, I’m not going to party until well after midnight. So what?
There is a list of supplements that many Thalassemia minor patients take. I’ll mention all the supplements I know because they crossed my path during my research, but I don’t take all of them.
I’ve already talked about this: don’t take iron supplements prior to discussing with a doctor that you have Thalassemia with an iron deficiency. Red blood cells indeed carry around iron in the body, but they can only carry a certain amount of iron because they are much smaller than healthy red blood cells. Don’t experiment with this yourself or with a doctor who doesn’t know that you have Thalassemia. I’m not against iron supplements, but I’m against taking unnecessary iron supplements because of a possible iron accumulation in the blood. If you do have an iron deficiency, iron supplements are a good idea. Personally, I never had an iron deficiency and therefore never took iron supplements. I’m not a doctor, but after all those years I dare to say this: iron supplements won’t help with Thalassemia and won’t make the Thalassemia go away (as some doctors say) and it also won’t help in making you feel less tired. You can read here more about iron on a plant-based diet.
Eventhough CLA1000 is a fat it’s known as a diet (weight loss) supplement and I have never tried it or really looked much into it. I know that some patients take this because it seems to store energy. CLA1000 will store your food and energy better and will make sure that fat is being converted into energy. I would discuss with your doctor whether this is suitable for you.
According to doctors, folic acid helps to build healthy red blood cells. I get a considerably higher dose than you can find in any drugstore. For decades I have been taking this every day and have decided to stop for a little while now. I don’t notice a difference in my body/enery levels, but will probably start again soon. The reason I sometimes take a break is due to studies like this one (about the side effects of higher dosages) that slightly worry me. I have not been able to find any studies as to whether these side effects may be different for me with Thalssamia minor and my doctor couldn’t give any advice on this matter, except that it’s important for me to take.
This is very important for me and I take this all year round. I also regularly go for a blood test to see what my vitamin D levels are so that I’m sure I’m not taking too little or too much vitamin D. Vitamin D can for example be a good idea if you are feeling a bit depressed, whether or not caused by Thalassemia minor. However, preventing a vitamin D deficiency has many other health benefits too, which is why I think this is an important vitamin. The body is not able to get rid of too much vitamin D so it’s useful to know what a save dosage is for you via a blood test.
Not only do I make sure to take my B12 supplement (although I have been at my max for years when I get my blood tested), but I also make sure that I get in all the other B vitamins too so that the formation of my red blood cells is optimal, my food can be converted into energy and that I feel more energetic.
To a certain extent this is important for the formation of red blood cells, but this vitamin is especially important for the maintenance and protection of the red blood cells. I get this from my diet. Just like vitamin D it’s not a good idea to take high dosages vitamin E supplements without knowing what your blood values are. An excess of vitamin E builds up in the body.
I use magnesium from a spray bottle that I make myself. It works well with muscle cramps, but also has many other benefits for the body. I spray magnesium under my feet and make sure I especially do this when I have difficulties falling asleep. This sounds contradictory (aren’t you always tired?), but sometimes the body works pretty hard to keep it all running with those weird red blood cells with the result that I feel restless. Magnesium under the feet and lavender oil in the diffuser often help with this.
The emphasis on antioxidants is big. I take this from my diet and don’t take this as a supplement. A whole food plant-based diet rich in fresh fruits and veggies is a good way to get in plenty of antioxidants
Some patients also add turmeric as an antioxidant to their list of supplements. Turmeric can be bought as a supplement or you can add it to your diet. I’m daily cooking wit turmeric in combination with black pepper to increase the absorption. Occasionally I will also buy a jar of turmeric supplements.
Zinc and copper
I don’t take a zinc and copper supplement, even though this is often recommended. Only if my blood levels would be low in zinc and/or copper I would take this supplement, but since all is fine I probably get enough from my diet.
Specialist also often told me about the positive effects on physical performance and endurance when using ginseng. I don’t use this and therefore I can’t say anything about it. I would discuss with your doctor whether this is suitable for you.
Selenium and vitamin C
I get both of them from my diet (e.g. selenium from Brazil nuts)
I’m careful with multivitamins because this is a mix of anything and everything and often too much or too little of what I need or what I already get from my diet.
After reading about all the above mentioned supplements, I can imagine you’re wondering if you really need all of that. But as you may have noticed I get most out of my diet rather than from a supplement. The focus is always on healthy food with a variety of nutritions plus a few supplements such as vitamin B12 and D. All the rest is personal and depends on your blood results and symptoms. Every day I try to focus on nutrition that the red blood cells struggle to transport in the body such as iron. I vary a lot with the food I eat and I also combine a lot of food (like iron) with a fat or vitamin C for a better absorption. But I also make sure that I generally eat a lot of fresh fruits and vegetables. Green smoothies (very low/no fruits) are perfect for this. As a result, I can’t even remember the last time I fell sick. Yes, I’ll always have anemia, but my body can deal with it so much better with good nutrition, rest and a routine.
What I know for sure is that my mental health is just as important as my diet. For quite some time I have been a great proponent of a gratitude routine (I have written about that here). It helps me to put things in perspective and to remind myself of all the good things in my life. It also helps me to not make a thing out of small issues in order to avoid stress. Time for myself is also important (like a lot!) because it helps me to build a positive relationship with myself where I stand up for myself instead of criticizing myself. Learning to love and accept myself is a lifelong journey, but at any moment I have the choice to take a step in the right direction by simply dealing with myself more lovingly.
I often push myself. Yes, it’s very painful if your doctor tells you that you can’t notice any symptoms because you were born with it or that it all can’t be that bad while you feel so tired. But I have to admit that we have control over how big we make a problem. As I get older I can tell very well when I’m really tired or when I’m just looking for an excuse to hide behind the diagnosis to for example not workout. I therefore think that I probably push and motivate myself a little more often than the average person to get something done. If I don’t feel like it and I think I can’t do it, I noticed by pushing myself and just by doing it without thinking too much I get things done. You’ll be amazed by all the things you can do, instead of focusing on what you can’t. The book ”The 5 Second Rule” is a book that recently helped me a lot by pushing me to just do it. There are people with Thalassemia who lift heavy weights, run a marathon, run 3 successful businesses and raise 4 children. Everything is possible.
Although I have anemia 24/7 only a few times a year I’ll have a so called ”anemic episode” where I’ll feel really drained. I feel worn out and at the same time I can’t be bothered to do anything. That’s when I know I’m too tired. I allow myself to completely rest (often I’ll only need 30 minutes on the couch) and I’ll feel all ok again. This sounds rather obvious (you’re tired so you rest), but two extreme things are possible. You give up too quickly (and don’t realize that everyone is tired once in a while and that’s normal) or you push yourself too hard (like me) and create unnecessary stress and guilt if you rest. A few times a year (this can be a lot more often for you and even be several times a week) when I have an ”anemic episode”, this will not announced itself in any way. So sometimes I have no idea what’s going on. Is it my hormones? Did I work too hard? Am I depressed? It’s only after a while that I realize that the anemia is causing the issue. I adjust my workout routine a bit and make sure that I rest when I need to. I pay extra attention to my diet and water intake and that’s about it. During this period I feel completely empty (both physically and mentally) and that’s ok. I’m no longer trying to resist this and I’m grateful that these episodes are so rare nowadays. I never had to call in sick at work for example, but I did often cancel social activities because I wanted to have the evening to myself and/or I didn’t feel like paying the price days after going out one night.
Surrender and it will pass much faster.
In short: rest if you really feel that you need to and don’t feel guilty about it. However, try not to hide behind your Thalassemia with everything that goes wrong or with all sorts of fatigue. “Normal people” are also tired sometimes. See yourself as a person without Thalassemia minor. Maybe you sleep too little? Do you drink enough water? Do you eat too little? Do you work too hard? Are you socially too busy?
The reason that I don’t like to write about this and haven’t done so earlier (despite many requests) is because I don’t think it’s important. I AM not Thalassemia, I HAVE Thalassemia and I decide how much attention I give this diagnosis. I may have been raised with the idea that complaining never helps. I don’t consider myself different or as a person with less energy. While writing this article, I asked my partner if he thinks that I’m different than other women my age and he immediately said no. Unless you’re a family member you won’t even know or notice that I have Thalassemia. Many describe me as an energetic and enthusiastic woman. Sometimes a problem only gets worse if you pay more attention to it or if you fight against it. I prefer not to pay too much attention to it, because what you don’t focus on can’t get bigger.
The above tips are personal and a summary of many years of my search for what Thalassemia minor really is and to what areas I need to pay extra attention. I hope this article has given some answers to the many questions I have received in the last few years. This article is not intended as an advice, but as an inspiration. I encourage you to do your own research or try to adjust your diet to a healthier diet and to see what works for you. Because what works for me, may not work for everyone and I think that every person and every illness is unique. I hope that this article is a comfort for those who feel alone or different and can find little information about this online. I hope that if you have Thalassemia you recogonize the symptoms and feel somewhat more ”normal”, because some awareness for Thalassamie would be so welcome, don’t you think?
If this article was helpful (in any way) or if you have any tips / experiences with Thalassemia, I would love to read it below or on Facebook or Instagram.