30 Things about My Invisible Illness You May Not Know

I was sent this list after National Invisible Illness Week ended and asked if I wanted to write about it either way, so here are my answers:

1. The illness I live with is: Multiple sclerosis, the house guest that ends up on your doorstep, invites himself in and never leaves again.

2. I was diagnosed with it in the year: I was diagnosed in 2005, three months before my 32nd birthday

3. I had symptoms since: Clear MS symptoms approximately 5 months before diagnosis; in hindsight unexplained “small” symptoms at least 5 years before that.

4. The biggest adjustment I’ve had to make is: Adapting to a permanently sedentary lifestyle, learning to pace myself and learning to say “no” to people when I cannot do everything they want me to do.

5. Most people assume: that, since I love laughing and being “the one that will have you in stitches in no time”, I am always feeling great. In their belief system, being ill automatically means being depressed all the time so if I’m joking around, it means that I am not ill at all in their own eyes. I learned to hide my symptoms pretty well even when I am in quite a bit of pain every single day (no point in dragging everyone down with me, right?)

6. The hardest part about mornings are: waking up and in that split second that follows, realising that sleeping once again did not take away that wretched fatigue.

7. My favourite medical TV show is: House, for sure. Because of all my years of being unwell, I can often pinpoint illnesses that match symptoms mentioned by its actors.

8. A gadget I couldn’t live without is: Laptop: Internet, writing, Facebook, reading, learning, Skype… what would I be without it?

9. The hardest part about nights are: Falling asleep way before others always do. Knowing my lifespan during the day is much shorter than that of others, is sometimes hard to swallow, but not trying to beat myself up over it is key. Also, waking up 3 or 4 times each night because of aches and pains is draining. A great morning is a great night is a great morning.

10. Each day I take: 28 pills.

11. Regarding alternative treatments: Each person knows his/hers own body inside out, and people adjust to their needs and wishes. It’s up to each of us to accept the choices people make without judging them.

12. If I had to choose between an invisible illness or visible I would choose: A visible illness. Too many times my honesty has been pulled into question by people I considered close friends because they refused to believe me when push came to shove. That said, of course, I would rather have no illness at all if that would stop people judging me. Nothing hurts more than the betrayal of a close friend especially when you have an incurable and degenerative illness.

13. Regarding working and career: I had two careers: one in Belgium in the libraries I worked in, the other in Ireland where I was an Incident Coordinator. I loved both very much which meant that it was very difficult trying to decide whether quitting my job to look after my health would be the right move. I hope and pray that one day I will be able to step back into the workforce.

14. People would be surprised to know: Despite being a people’s person, I do have moments where I need to return to myself and rest, away from noise, busy environments and people.

15. The hardest thing to accept about my new reality has been: Having to give up work and accepting that the “old” me had to make place for a newer version, unable to do certain things I used to do.

16. Something I never thought I could do with my illness that I did was: Stepping up and using my voice for other people with disabilities. Blogging, advocating, lobbying and generally annoying people in high places in a friendly but please-listen-to-our-pleas kind of way is something I never thought possible. Since English is not my native tongue and as a foreign person living  in Ireland, I was quite surprised when I started receiving positive feedback from those in high places. When I was then shortlisted for the Ireland Blog Awards 2013, having MS is not the end of my life, but a beginning of a very new, even more exciting chapter in my life.

17. The commercials about my illness: Twenty five years ago there was no treatment for MS. When I was diagnosed, you had the usual DMDs in the form of injections (Disease Modifying Drugs), while 8 years later there is also oral and intravenous treatment. Something tells me that we are on a wave of more new medication being presented to MSers, and that our outlook on life will keep on getting better as time goes on.

18. Something I really miss doing since I was diagnosed is: Hillwalking.

19. It was really hard to have to give up: a life free from depending on anything or anyone.

20. A new hobby I have taken up since my diagnosis is: Writing!

21. If I could have one day of feeling normal again I would: Hillwalking in the Irish countryside.

22. My illness has taught me: Patience (not much, but still…), showing grace in defeat, philanthropy and knowing that life is worth every second of every minute of every day.

23. Want to know a secret? One thing people say that gets under my skin is: “But you don’t look ill!” or “If only you lost a little bit of weight!” (Answer to both: that is because a) I got pretty good at hiding my symptoms and illness and b) I was a size 8 in when I was diagnosed in 2005.  I was so tired I could not even crawl up the staircase with my size 8, so my current weight doesn’t have anything to do with me being that tired).

24. But I love it when people: Hug me for no reason at all.

25. My favourite motto, scripture, quote that gets me through tough times is: “Yabba dabba doo!” and “That which does not kill us, makes us stronger” by Friedrich Nietzsche

26. When someone is diagnosed I’d like to tell them: No matter how bleak things look, there will come a time where you will sit back and ask yourself how in god’s name you went through everything with grace, and survived.

27. Something that has surprised me about living with an illness is: How strong I was during rough bouts of chronic pain.

28. The nicest thing someone did for me when I wasn’t feeling well was: Endless love and support from family and friends, being there when I need(ed) it most. It’s not the most expensive gifts that count, but the small ones of friends and families willing to take some time out, to listen and often physically support you.

29. I’m involved with Invisible Illness Week because: Raising awareness is so important!

30. The fact that you read this list makes me feel: Blessed.

©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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