7 Secrets I've Been Ashamed to Tell Others About My Illness

I’ve struggled with severe ME/CFS for 11 years now and I’m only just realizing I’m ashamed of my situation. I think I’ve known it all along at the back of my mind, but only now has it formed itself into concrete words in my head. And on this piece of paper.

I’ve always been very private about my illness; I’ve never liked people beyond my family and friends to know. I don’t want people to pity me. But most of all, I now realize I’m ashamed of my life, or lack of it. I’m rarely well enough to get out but if I do, I dread bumping into somebody from the past. Questions like, “What is your job?” or “Do you have kids?” would make me feel such a failure.

Even though most of my wider circle of acquaintances now knows I’m ill, there are still details of my life I prefer not to admit. But I hope by sharing them here, some of you will feel that you’re not alone. So here goes:

1. I don’t get up till 9:45 a.m. And by “get up” I mean drag myself out of bed. And my alarm has already been going off at regular intervals since 9:00 a.m. I know the healthy ones amongst you might be wishing you could sleep in that late. But believe me, you feel a lot better getting up at 7:00 a.m. (or earlier) than I do several hours later. I wish I could wake feeling well enough to go to work and not wondering how I’m going to get in the shower.

2. I don’t get dressed till 1:00 p.m. Mornings are not my best time. It takes me all morning to eat breakfast, shower and get dressed with long rests in between. So if I text you in the morning, you may be alive and part of the real world, but I will be in my dressing gown in bed.

 

3. I spend about 70 percent of the day resting in bed. And resting means lying quietly, resting both my body and my brain; no television, no internet, no music. So while the healthy ones amongst you might be getting on with your busy lives, I’m watching time slip through my fingers. If I didn’t spend all this time resting, I wouldn’t be able to manage the small tasks I do.

4. I’m dependent on my husband. Growing up, you don’t expect to lose your independence till old age. It’s a cruel blow when it happens in your early 20s. Fortunately, I have a fantastic husband who cooks, tidies, shops… You name it, he does it. (Apart from cleaning – fortunately we have a fortnightly professional clean!) Still, it’s not exactly the ideal relationship balance.

5. I don’t have a job. You’ll have already realized this by now. But it still bites deep. After being an ambitious academic high-achiever, having to fill out a form with the word “unemployed” is soul-crushing. It’s not my choice, I want to yell (but yelling is rather beyond my current capabilities).

6. I don’t exercise. Before I fell ill, I would get irritated if one day went by without the chance to dance, swim or walk. Nowadays, it’s at the bottom of my list of priorities… In fact, it doesn’t even make it onto the list. I have more important things to worry about than cellulite and conditioning, like having the energy to wash and eat.

7. I haven’t been on a night out in 11 years. There goes my street cred (well, any last shreds of it I had!). The last time I went to a pub, smoking was still permitted and last orders were at 11:00 p.m.

So there you go. Like it or lump it, this is my life. And from now on, I’m going to try and work on not being ashamed. The first step to overcoming something is admitting it, right? So I’m going to try and work on being proud of my life. Not ashamed of what I can’t do but proud that, in spite of the illness, I’m still battling on. Because this is me, this is my life and it’s the only one I have.

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Thinkstock photo via kieferpix.