5 Things I Want to Tell the New Person in My Life About My Illness

Like many people with a chronic illness, I sometimes find it difficult to explain it to someone new and I often avoid saying anything at all until it becomes absolutely necessary. Even if I’m asked, I’ll avoid it for fear of being questioned or getting the usual “you don’t look ill enough” response. So, when I moved house and settled into a new church, I followed the avoidance plan for a while – until I couldn’t avoid my illness any longer. I plucked up the courage to answer, “How are you?” honestly when the rector asked me, and the support she’s given me since telling her about my myalgic encephalomyelitishas (ME) been amazing. Yet, there are still a few things that have been left unsaid and I’m trying to find a way of explaining them gently.

1. “I haven’t always been like this, I used to have lots of energy.”

We didn’t know each other when my journey with ME started six years ago, but you are one of the few people that I have told since I moved here eight months ago. This means that you didn’t know the bright, bouncy and energetic person that I was before this cruel illness took over. I would have loved for you to meet that person! She went to university full-time, danced three nights a week and did volunteer work in her spare time. Instead you have the person I am now – always exhausted, struggling to get through the week and catching naps whenever the opportunity presents itself.

2. “You’re looking good.”

“Erm…Yeah I’m OK.”

I’d really like to tell you the truth instead of just agreeing that I’m OK and giving you a weak smile. You want to know how I’m really feeling but it’s difficult for me to open up, particularly if there are lots of other people around. The pain will only be visible when things have gotten really bad, and the fatigue is always there but invisible. There’s only my mum and a few close friends who can really spot it. When I go home I won’t be having an action packed afternoon like most people my age, I’ll be crashing out on the sofa.

3. “Are you free to meet today?”

“Well, erm, yes, I suppose so”

I asked if we could talk so I didn’t like to say no, even though I didn’t have much notice. I turned up to meet you after work and struggled to sit up straight to drink my decaf latte. I felt awful because I wanted to talk to you about something that had really worried me, yet I couldn’t find many words and wasn’t at all coherent. You listened without judgement even though my anxieties about living on my own, working and managing my health probably seemed ridiculous. I hope you don’t think that I wasted your time because talking to you helped a lot.

4. “Would you like to help with children’s work on Sunday?”

“Yes, that would be great.”

I’d love to help you out with the children’s work and you know I’m good at it. If I could I would help every week and more! Though the reality is that after battling to get to work through the week and collapsing into a heap on Saturday, being up on a Sunday morning can be pretty tough. I wish I could have a better work-life balance and do all the things I want to on the weekends, but getting enough rest has to take priority. Please don’t let this put you off asking, sometimes I might just be able to muster the energy from somewhere.

5. “How are you? I missed seeing you today.”

Thanks so much for texting me to check that I’m OK. I wanted to be around but my body was having other ideas and instead I haven’t managed to get out of bed. Thanks for texting me first and not waiting for me to tell you that I’m not well – you’d probably have been waiting for a very long time. Please keep in touch, it could be a while before I’m well enough to be out and about again.

It’s never easy to tell someone new about a condition they can’t see, especially when you look fine on the outside. This time, I’m pleased I did because I now have someone who can offer support if I need it and I didn’t have that before. So, if you can, tell that person you’ve wanted to tell for ages. They might be more supportive than you think.

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Thinkstock Image By: Ferdiperdozniy