A Ehlers Danlos interview , Attention Deficit Hyperactivity Disorder.

Katinka's interview


How did all start?

Growing up I had what everyone called 'growing pains'. Problem is, I still have the same pain and I am now 48 yrs old! I was clumsy, I tired quickly, I could bend myself double... Backwards! I bent over backwards, took a hold of my ankles with my hands and bent my head back so I could look ut between my legs. That didn't hurt, wasn't hard but for two full days I would have problem to get out of bed. Turns out I can still do a lot of things others can't and it doesn't hurt one bit, but I pay a hard price the following days when I have done too much. There are no words to describe that pain that follows.

Do you already have a diagnosis? How long did it take you to get it?

Since I was 18 yrs old I have tried to find out what's wrong with me. A LOT of doctors have said that there is nothing wrong with me. I had a hard time to accept that. I knew something was wrong. Seven years ago a friend asked if I heard of EDS, and I started to look into it. What I read when I came to the hEDS was me spot on! I was crying of relief! Finally, there was something that explained everything that was not right! Then I met more than 15 doctors, specialists in all kinds of matter, but no-one wanted to even try to diagnose me. They said i was hypochondriac. Finally I chased down the top specialist in the field in Sweden and he made my diagnosis within 30 minutes. But its took seven years to get the diagnosis after finding out about it.

For what medical specialties have you been treated? What has been the most useful specialty for your?

Feldenkrais treatment has been really one of the best things I have encountered. I makes my muscles relax all the way. I have Fentaly, bandaids with Morphin to funktion on a daily basis.

What has been the most useful thing for you so far?

Feldenkrais treatment and the morphin bandaids gives me a chance to go out and live a full life. Still in pain, but bearable.

What have been your biggest difficulties?

Pain. Pain. Pain and Pain. I have suffered from pain for as long as I can remember and it is really tiering to live with. To be believed when looking for help from the doctors. It is also hard to give a good answer when people ask how things are going. I have started to say 'As expected' or Better than expected. What do you answer? It may be good in a lot of ways but it is never really all good. I don't want to talk about the pain and my hardships. I deal with that all the time, when I meat people I want to talk about fun things that energies me!

How has your social and family environment reacted? Have your social or family relationships changed?

Well, some still doesn't believe, not the hEDS or the ADHD. But it really hasn't changed the social side since the people that is around me has always known about my shortcomings and accepted med as I am. My family by blod refuses to accept any diagnosis. Even though I can see both diagnosis's in most of my relatives.

What things have you stopped doing?

Riding a bicycle! That is really one of the best things! Finally I have a really good reason not to ride a bike! It hurts my joints in a manner that few other things ever done! Seriously though, I have learned to give my selfe som slack. I don't push on when my body starts to protest to loud. I do let body win over mind every now and then.

What do you think about the future?

Good! Now I know about my problem and I can work around it in a completely different way!

So far, which years have been the best years in your life? What have you done during them?

Don't know! I have had a fantastical life since I moved away from home. I have followed my dreams and since no-one ever told me that I had limitations I have lived all out. In retrospective I don't regret any of it even though I know that my 10 yrs as a head-chef was probably not 'good' for my EDS and that I might have had it easier now at age of 48 if I had not pushed so hard. Still, I have to say it has been worth it!

What would you like to do if you didn’t have your condition?

Climb mountains. I always wanted to climb mountains, but my fingers wouldn't hold on to the cliffs and my pain became unbearable very fast whenever I tried.

If you had to describe your life in a sentence, what would it be?

I followed my passions and dreams without respect for my limitations.

Finally, what advice would you give to a person in a similar situation?

Find things that are good. Find a good outlook. Follow your passion. My daughter is studying to become a special effects artist in the movie business. That will mean she will work with her hands out in the air straight infront of her. Extremely hard on her shoulders and the top back area that is already now giving her a lot of pain. The doctors told her to forget about her dream. I say go for it! We have found supportive orthopedic help and she has now some devices that helps her. It still hurts, but if she want a life without pain she will have to die. We have a condition that we live with constant pain 24 hours a day, 365 days a year. The pain will not take a break. It doesn't matter if we stay home and don't to anything or if we go out and fetch our dreams. We will still be in pain. So, we rather do something that we love than stay home, isolated and in pain.


Mar 18, 2019

By: Katinka

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