Anja Vesterhus Knustad is a beautiful chronic illness warrior from Norway. She is a student and also uses her time to help educate, advocate and support chronic illness sufferers. Learn more about her and her journey from the following interview.
1. What is your diagnosis?
I'm diagnosed with M.E, Myalgic Encephalomyelitis.
(This is also known as Chronic Fatigue Syndrome, CFS or ME/CFS).
2. Tell me about your journey.
My journey is a long one. I was a super active child, I never sat still. I loved to be in activity, do sport, soccer in particular, and I always had things to do. I found joy in lots of things, and I loved life. But when I was 8, my body collapsed out of the blue. Out of nowhere I lost all energy and had lots of body pain. At that age the worst symptom was nausea, but also had lots of muscle pain among other things. But then I just had to rest for a couple days where I barely could move, and then I got better. I had several episodes like that, and when I was 10, I was ill all the time. I never had energy and only got worse. I had been picked up by the ambulance several times and I had seen a lot of doctors without getting any answers. So when I was 10 we started the investigation to figure out what was wrong. But that was a tough battle. We met lots of doctors who didn't believe us, and when the test results came back fine, they sent me home. (I talk more about this at question 6) So my mom had to fight for us to be heard. Overall, it took about two years of investigation to get diagnosed with M.E. The thing with M.E is that there are no specific criteria to get diagnosed. You have to rule out everything else first and then if you still are sick and have had extreme fatigue for a longer period of time, that's when they give you the diagnosis. It's a difficult thing to navigate. Some people get wrongly diagnosed with M.E when they in fact don't have it. And other people don't get professionally diagnosed but still say that they are sick with M.E, and that's a shame because that undermines the people who actually are sick with M.E.
3. How has your life changed since becoming sick?
My life has changed in every way. Every single aspect of your life gets affected when you become ill with M.E. I haven't been able to finish high school, so I only take a couple classes at once. I do interior design, and this year I only have one class. It takes a lot longer for me to graduate than other people, so it's been a challenge to watch people my age start university and get on with their lives. It also affects my physical abilities. I have very little energy to do things, often I can't shower or make food. I'm also in constant pain and I have many symptoms such as dizziness, heart rate issues, sensitivity towards light, sound, taste, and touch. It's also affected my mental health. Even though M.E isn't a mental illness, it still affects your mental health to be in daily pain, being isolated and treated badly by people. It's been a really tough battle.
4. What has been the most challenging part of your health journey?
There are many challenging parts, but if I have to choose, the hardest one must be to be disbelieved. My so-called friends talked bad about me behind my back. To my face they were understanding, but in reality, they called me attention seeking, lazy and a liar. Health professionals have also said that I'm overreacting, that I'm scared of getting tired and have told me it's all in my head. I don't want to be sick, and to be told by others that that's what I want is so hurtful.
5. What have you learned about yourself and the medical field?
I've learned that I'm super strong minded. I never give up no matter how difficult things get, and I always try my best. I have learned to speak up for myself and stand my ground. I've also learned how much lack there is of understanding and education when it comes to M.E, and how important it is to raise awareness and speak up. In the medical field I've learned that a lot of doctors should not be doctors. I've met health professionals that should never have worked with people in vulnerable situations.
6. How have your friends, family, and community been in the midst of this?
As mentioned earlier, I had friends who didn't treat me well at all. When I started getting sick at the age of 8 and progressively got worse till the age of 10, my friends started treating me like I didn't exist. They started excluding me, never invited me to anything and I had to witness everything on social media. At school they spoke about how fun they had together and how much they were looking forward to getting together after school. It was terrible and I felt worthless. I thought there was something wrong with me, was I that terrible to be around?
When it comes to family, I have members who don't believe me. I've been yelled at for not having energy to do things, and I've been told that I've given up and don't want to get well. Luckily, my mom has always supported me and been my rock. If it hadn't been for her, I don't know where I'd be today. She is amazing. She's the one who had to fight for me when the doctors didn't believe anything was wrong with my body. She's been my number one supporter and believer the entire time.
The chronic illness and M.E community that I am a part of on social media has been amazing. I started my Instagram and TikTok accounts to help others who feel lonely and not seen. I've talked to so many amazing people who are in the same or similar situations as me. It gives me a lot to be able to share my story and to see that it has a positive impact on others. So, I'm really grateful that I started this journey of sharing and raising awareness, because it's so needed. I also hold lectures about what it's like to be young and chronically ill, so that's something I'm also very passionate about.
7. Do you have anything else you want to share?
I want to say that it's so important to not give up. If there's anyone out there who struggles and doesn't see a way out, please do not give up and remember that there are others who are going through the same thing. I know life can be ruthless, but don't let those hard times win. Also, if you have a chronic illness or know something is wrong with your body, keep on advocating for yourself and speak up. It's difficult and it takes a lot of energy, but do not give up on yourself. You're the most important person you have, so if you know something is wrong, keep on fighting for yourself despite people pushing you down. You know your body the best.
If you want to follow her journey check her out on Instagram at this.is.the.illness.me !
To learn more about ME/CFS check out the following sites.
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