I want to preface this by saying this is not a situation, or reality, that is unique to me. However, I would argue it is a situation which every person who suffers from a chronic condition deals with. That is, how much do we let on when things are bothering us? How do we balance, or tread that fine line, between letting people know how we are feeling and becoming the person who moans about their health. Of course, it is justified moaning. It is a rubbish situation, but, as the fable saying goes, it is what it is.

I have struggled with this more and more as I have gotten more and more active. Suddenly, either my complaints are not justified since I am so active (and therefore can not be hurting that badly) or (in my head probably) noone wants to hear about the sick person moaning about their sickness. My complaints these days have reduced to “my back has been better”. As if the chronic fatigue I have has suddenly evaporated, the restless nights aren’t there, the random bouts of losing feeling in my legs, the sciatica, and IBD related symptoms have evaporated. All of that is now encompassed in “my back has been better” – quite impressive really. Or, more recently, I just don’t talk about it.

Part of that stems from not even knowing what to say. I can’t explain how that feels to someone who has never really experienced it. Of course, people have experienced tiredness, pain, restless nights. Not many have experienced that every day for X amount of years. I mean literally every day. Even the good days are pain filled, the bad days are just worse. Yet, every day starts the same way. A creaky hobble downstairs as the back loosens up and on with the day we go with a smile because “life is sweet” and “the time is now” (both mantras I do genuinely believe in).

For the few who ask (there aren’t many and I want to make it clear I don’t blame them for not asking) 8/10 times I would probably give the answer of “been better”. Again, trying to tread that balance. People want to be friends with the happy person. Afterall, life is for living and people should be happy. Those kurt answers are definitely a defence mechanism, and I know that, and also probably a slight chip on my shoulder; I want to be healthy and normal. I don’t want my Friday nights to be taking injections, I don’t want letters in the post with hospital reminders, appointments, test results, or warnings that I need to socially distance myself.

Not many of my friends have been told to socially distance, and very few have even checked in to see how I am doing. I am just going to assume they think I can deal with it because I have dealt with everything else – what is locking myself away for a few weeks / months in the grand scheme of things. I have left my house 3 times in the last 4 weeks. It doesn’t matter who you are that isn’t great and mentally that is HARD. A lot of people are concerned about the old and vulnerable, but what about the young and vulnerable? Again, don’t want to be the person moaning.

I bring this up now because I’ve been struggling with this again, and historically I have never had to worry about the consequences of it. Normally I internalise it and deal with it in my own time, but there are people around me who are affected by it all now. People I care about. The leash will only be so long for so long. Even those with good intentions have a limit.

The other side of the coin is I want to protect those around me. I saw how upset my mum got when I first got ill; the restless nights, the worry, the stress. No one likes to see someone they care about in pain. Let alone the type of pain which won’t go. It isn’t a broken leg. It will never heal. So, as far as I am concerned, out of sight is out of mind. I don’t want people to worry, I just want them to understand.

Damned if I do, damned if I don’t.