30 Things About My Illness by Eva

It is a privilege and an honor to have Eva as a guest blogger for Invisible Illness Week. Eva is sharing her “30 Things Meme” with you, my What The Jules readers.

30 things

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Ehlers-Danlos Syndrome of Hypermobility Type

2. I was diagnosed with it in the year: 2013

3. But I had symptoms since: All my life, you are born with EDS. But it flared and became worse than ever in 2012, this lead to my diagnosis.

4. The biggest adjustment I’ve had to make is: Learning to live with the uncertainty. What works today might not work in two years or even tomorrow.

5. Most people assume: That I exaggerate when I tell them about how it is. Who would believe that you can dislocate a toe geting on a bus if they haven’t seen it themselves or are in the same situation as I am?

6. The hardest part about mornings are: The tiredness to want to sleep a few more hours, but the pain of lying in bed is so much that it forces you to get up.

7. My favorite medical TV show is: ER

8. A gadget I couldn’t live without is: My husband. (But, admittedly he isn’t a gadget.)

9. The hardest part about nights are: Finding a comfortable position to sleep in.

10. Each day I take __ pills & vitamins. (No comments, please) None. What’s the point, they don’t help anyway.

11. Regarding alternative treatments I: Regularly, I see an occupational therapist, a physiotherapist and an osteopath. The physiotherapist and osteopaths are the only reason that I can get out of the house.

12. If I had to choose between an invisible illness or visible, I would choose: Well, they say that the grass is always greener on the other side, but I don’t know... When people see me, they treat me like a person and not as my disability. That is the good side of having an invisible disability. I think the risk of being treated differently is greater if I were in a wheelchair or had any other ”obvious” disability. But sometimes it would be nice to have something visible so as not to have to explain as much and expose your entire life trying to get people to understand.

13. Regarding working and career: I would love to work and participate in society but I am having a hard time switching careers. To be let in, or take a position is hard. Especially when I don’t know if I can do the same thing in two years.

14. People would be surprised to know: That even though I almost always smile I am always, no exceptions, in pain.

15. The hardest thing to accept about my new reality has been: To have to slow down. Not being able to work as much as I like.

16. Something I never thought I could do with my illness that I did was: Everything I have ever done I have done with my illness so I can’t say anything. I have lived my life.

17. The commercials about my illness: There is no discussion about my illness on TV. No one has heard of EDS. Only doctors and others with the condition are aware of  EDS. Most doctors only have a vague idea of what it is. Some doctors only know of a few symptoms, most of which only a very few of us have.

quote by eva18. Something I really miss doing since I was diagnosed is: Working.

19. It was really hard to have to give up: I haven’t given up. I do all that I always have done, but maybe in a slower pace.

20. A new hobby I have taken up since my diagnosis is: None. I already had plenty of hobbies! :)

21. If I could have one day of feeling normal again I would: I don’t know what normal is, having never been normal. But if I could have two days without pain, I would do orienteering again, walking not running. There is nothing like the feeling you have on a crisp autumn day on a forest path when the leafs are changing colour, some have already fallen, and the sun is shining.

22. My illness has taught me: The diagnosis has taught me that it isn’t normal to always be in pain, and never completely heal after an injury. That is my reality but not everyone else’s. There is life without pain. And the thought of that feels amazing. Imagine: a life without pain? I can’t help but wonder how that would be, even for a day.

23. Want to know a secret? One thing people say that gets under my skin is: Why don’t you just…
give up?” or
ignore it?” or
just do what you’ve always have done?”
I can’t just give up, that would mean suicide, and I am not there yet. I can’t just ignore it and act like everything is the same as it was before my diagnosis. Now I know that if I don’t pace myself, and keep forcing myself as I did before, I will just do more damage to myself and have even more pain as the years go past.

24. But I love it when people: Give me a cup of tea, and just let me quietly sit where I am and be a part of the gathering without obligation.

25. My favorite motto, scripture, quote that gets me through tough times is: “Tonight there is one less day left of your life in which life can get worse.”

26. When someone is diagnosed I’d like to tell them: Congratulations! Getting the diagnosis explains a lot. Now you can get advice about what to do, and what not to do. That gives you the opportunity to get a better future than you would have had if you had continued undiagnosed.

27. Something that has surprised me about living with an illness is: The harshness of employers. I have always known that companies exist to earn money but I still thought that they considered their employees as assets and an investment. They have spent the time to further educate their employees to fit the demands of a specific role and maybe have even provided further education.
I was, therefore, surprised to learn that so many companies seem to see their employees as no more than a throwaway product as soon as an employee cannot work full time. I was not prepared for that, I thought that with two university degrees I would still be worth something…”

28. The nicest thing someone did for me when I wasn’t feeling well was: Giving me a cuddle.

29. I’m involved with Invisible Illness Week because: We need to get out there. And invisibility isn’t easy to put on display.

30. The fact that you read this list makes me feel: A bit sad. Because I think most readers are also ill or, have an ill relative. Not enough healthy people will find their way here.