Isn’t it amazing how invisible an invisible illness can make you? Add in that most people haven’t come across an illness like CFS/M.E and you are a target for ‘helpful’ advice. I’m sure we have all had comments like “Why haven’t you tried more exercise? The stronger you are the better, surely that would help?” Whilst to a certain degree we can all agree that muscle wastage isn’t good, we all know that would make the situation a hundred times worse.
Invisible illnesses are often the most misunderstood. I guess if you were to consider that there are few and subtle indications you are suffering, you can see why many think we just need to try more. It’s quite an isolating feeling when you feel like the face value of you isn’t an accurate representation of how you are.
For instance, a few weeks ago I had a joint party for my Mother and myself. We had both had significant birthdays this year and chose to delay the party for the summer so that we had the best opportunity for all our family to attend. We had meticulously planned the weekend so I could spend the most amount of time with family. We went to a local hotel for a cream tea, but in the chaos of arranging people into cars (there were 20 of us) we forgot my wheelchair. So, my Dad dropped me at the door of the hotel. I had help into the hotel, straight to a chair. Whilst it wasn’t ideal, I managed just about. I didn’t think anything of it really. The rest of the day went on and I was around and trying to catch up with my family that I don’t see too often.
Fast forward to the day after, late evening. I’m beyond exhausted and feeling awful from the full-on weekend. I am saying goodnight/goodbye to the last few people still here. By this point, I have to hold onto furniture and the walls to be upright and walking. One family member blocks off my exit and proceeds to first thank me for the party. All good. Then turns to “We have enjoyed seeing you this weekend and we can really see such an improvement in you. You are going from strength to strength and it is a delight to see.” It’s an innocent remark, isn’t it? I know their intent was to be encouraging and kind. However, at that point, it was all I could do to not burst into tears and not say a caustic remark. So I smiled and said, “Thank you”. Thank. You.
That in a nutshell to me explains why having an invisible illness is so isolating. The surprising unawareness of even family members and friends highlights how much knowledge people have. I am not bashing my family at all; they do their best and I know I am supported and loved. This sort of scenario was why I chose Seeing Me In Reality as my blog title. To me it has two meanings; the first being, in reality, there is a high amount of invisibility due to the invisible illness, but also a wheelchair as well. But in my opinion, seeing M.E in reality, not many can see it, a little like the Loch Ness Monster. A mysterious thing often spoke about, rarely sighted. Yes, that is Loch Ness. 10 points if you spot Nessie haha.
But despite all of this, I know that I see people who are ‘invisibly suffering’ and the collective of us ‘invisibles’ and our circles see us too. Sounds less lonely, doesn’t it?
Stop being invisible, comment the best worst ‘helpful’ advice you’ve ever had.