When people are unwell or live with a chronic condition, it can be hard to know what to say for the best. I think it is in our nature as human beings to try and ‘fix’ things. Sadly though, this just sometimes can’t be done, and we have to accept that ‘it is what it is’.
I thought I would share with you, some things that people have said to me about my hidradenitis suppurativa – it may make you smile, or roll your eyes, or you may think yes I’ve been there too!
You Have a Boil?
The first and for me, the most frustrating thing people have said is when I tell them about my condition. They say “oh, so you have a boil! I had one once.” I then try to carefully and tactfully explain that Hidradenitis Suppurativa is so much more than just a boil! Even then, I still have been left feeling that people think I’m exaggerating!
At Least You Can Work
The second thing not to say is “well at least you can work”. Don’t under-estimate the sheer determination it can take to show up to work. Dealing with pain can be a huge issue. Getting up out of bed can take some serious motivation. Carefully selecting dressings and getting ready for work takes time. Wondering if you will need that spare pair of trousers or top in the car can cause anxiety. On bad days, it takes a lot of strength to get up and go to work. It can be a struggle.
It’s Just a Skin Condition
The third thing not to say is “its just a skin condition”. Again, I have to remind people that when you are experiencing a flare up, the chronic fatigue can be crippling. You have zero energy for day today activities and you have to keep convenience food in the cupboard for days when you just cannot cook.
But You’re Smiling!
Number four of things not to say is “it can’t be that bad, you’re smiling” Let me tell you that HS warriors are highly skilled at smiling through pain and discomfort and that a smile is no indication of our wellbeing or distress.
Never Heard of It
Lastly number five of things not to say is “there never used to be diseases like this, never heard of it!” At this point I have to educate people. For many people with hidradenitis suppurativa, it is a very private condition. Some people feel incredibly embarrassed by it. I still have days where I won’t mention it to my GP even though I know I should. But websites like this, that inform and educate, that offer hope and share solutions are the very reasons people have heard about HS. I will continue to educate and share until the condition is as understood as it can be!
There may be plenty of other things that you would add to the “please don’t say that” list, and I am pretty confident you will had people say such things to you. Together through our peer support and knowledge sharing, we will educate the world!
About the Author
Clare Knighton is a Peer support worker from Worcester, England. Clare lives with HS and has done so for the past ten years. She is passionate about helping others to talk more openly about the condition and about improving our mental wellbeing.
I have just been diagnosed with HS. This is very new to me. I thought this was my sarcoidosis. I’ve learned so much in a short time. After learning that the pain and fatigue are also a part of the Sarcoidosis I think I’m going to give up the shame of always being tired or drained or in pain. I will just embrace the good days.
Sorry to hear about your recent diagnosis. Your approach is great – we all have days when we are too tired, and we don’t need to feel any shame around that at all. All we can do is our best, and like you say, embrace the good days Xx