Raising awareness to invisible chronic illnesses

May is a very big month when it comes to holidays in Austria – with a wooping 4 holidays. However, it also is something else all around the world, which a lot of people don’t know about: May the 12th is the awareness day for Fibromyalgia and Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis). As you know, I was diagnosed with M.E. last year, only to be “re”-diagnosed with Fibromyalgia this year. Both illnesses are chronic and very misunderstood. So I decided to share with you my experience.

Around 99% of the symptoms of these illnesses actually overlap. The big difference, according to the doctor I spoke to and people who have these, the fatigue. Myalgic Encephalomyelitis makes you extremely fatigued, in a way where you cannot even get up. While Fibromyalgia in very severe cases can also give you fatigue, it is actually a cause of the illness and not a symptom. The main symptom of fibro is actually widespread pain. When you are in pain for a very long time, your brain sort of “shuts down” and you start having cognitive issues as well. Think about it, if you’re in pain, you cannot rest and if you cannot sleep, your brain won’t be able to rest. Hence the cognitive issues.

I cannot even remember when I first felt pain. I remember waking up in the middle of the night with my legs hurting so badly, I couldn’t sleep for hours. I know it started in my legs and according to my mum, it started when I was around 4 or 5. She took me to a doctor and nothing was found, so they said it was from growing. That stuck until I was 14, when it turned into “it’s because you’re a teenager”. Which is when I just gave up. I have to admit, even though I had phases of worse pain, I could handle them pretty well and it sort of turned “normal” to me. I also had times when working out was extremely hard, excrutiating actually. Especially after working out, the pain would be intense and the soreness would last way longer than with other people (still does). 

When you live with pain and no one believes you, you end up giving up trying to explain it. I did and more than once I had people saying I was just lazy. I know my dad feels bad for doing it when I was younger, but there is no way he could know what really was going on, none of us did.

I’ve experienced all of the symptoms stated above. However, because the symptoms of fibro and M.E are so widespread, these are extremely hard to diagnose. Also, they can also indicate something completely different, like anemia. Or a severe B12 deficency. It is also extremely hard to find a doctor who can help you, good luck finding one that will believe you – especially if you’re young! That’s why it is so important to raise awareness for these conditions, and so many others that don’t get the necessary attention. 

I am lucky enough to be surrounded by people who support me, to share my life with a man who is not only always there for me, but will also give me strength when I feel I have none left. I was extremely lucky to have found a doctor who believed me and prescribed me a medicine for the pain which I started taking a while ago (I will write a post on it once I’ve been taking it longer, you need to take it for a while before it works) and to have an amazing friend who got me an appointment with her GP (now also my GP), who took me seriously. And even though this GP told me she also thinks I have fibro, from all the exams and tests I showed her and all I told her, she also said it would be a difficult process and all we can do is try to manage the pain and with it the other symptoms. But at least, she believed me, and that’s more than any doctor ever did. 

If you know someone who had fibromyalgia or M.E, take the time to talk to them and find out how they feel, how they deal with it, how it affects their lives. When you look at me, you see a normal girl. You don’t see the disability, you don’t see the pain, you don’t see the difficulty I have to even just walk for 5 minutes. Raise awareness, read articles.

More likely than not, you already know someone suffering from a chronic invisible illnes, so why not support them? 

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2 Comments

    • Rosie Waldherr
      23. July 2016 / 11:08 am

      Thanks Minnja! It truly is…

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