Last week I wrote a piece on mental health and chronic illness and how they are often co-morbid. Whilst researching the piece I found this striking image and after trying to fit it in to the post, decided that it was addressing too many issues on top of the ones I was already addressing. However, it’s been bugging me ever since and despite having had a terribly painful night with little sleep, I need to get this bug-bear off of my chest.
I really identified with the ideas in this picture and have often found it really irritating to hear people discuss mental health issues in this way; using adjectives to create the impression that somehow they are not responsible for their behaviour. It got me thinking…
I bet someone that says “you almost gave me a panic attack” has never really experienced the frightening heart-racing, sheer and utter hysteria that comes out of nowhere for no real reason. I have. It’s scary and it’s debilitating and I’ve had it diagnosed by a medical professional.
Does someone that say “I’m a bit OCD mean that they’ve been diagnosed as being on the lower end of the spectrum? (I doubt it) or does someone that say “you look so anorexic” to a young girl think of the power of those words and the actions she might take because of it?
Do you ever have a really bad headache and say “I’ve got a bit of a migraine?” Loads of people do. That’s part of the problem you see, and why there is such a stigma around migraine. A migraine isn’t just a bad headache. You shouldn’t say you have a migraine unless you’ve been diagnosed by a medical professional such as your GP or a neurologist. There are strict guidelines for diagnosing migraine, just as there are for diagnosing bi-polar or OCD (which thankfully I do not have) and by stating that you have a migraine without being diagnosed with them only adds to the ‘shame’ of suffering with them.
Now, I’m very lucky in that I don’t have people in my life that don’t believe that I’m unwell; however as you know my story is complicated by this whole IH and restricted venous outflow malarkey. But so many people are stigmatised for having migraines when they are chronic and are affected by them for more than 15 days a month. As you can imagine, this leads to missed days at work, cancelled meetings and lack of social and family life. People that are affected by chronic migraine are often bullied in the workplace; lose friendships and sometimes even have family members turn their backs on them. The reason for this? Because they think they are making it up! This happens to loads of people in the IIH community too. I see it on loads of posts on the Facebook support group, where people have to try and convince their family that they are really unwell and not just trying to get benefits. I can assure you, that it’s hard enough to get the help you need when you are housebound, it’s not easy to blah benefits anymore!
I’ll be honest; I have lost a couple of friends along the way; people who I thought were good friends, some who I’ve even supported when they’ve been ill, but I haven’t lost many. In fact I’ve gained friends through support groups and strengthened many friendships, where true loyalty and kindness have shone through! And, I don’t know where I’d be if it wasn’t for the school mums community coming together and offering to help out with lifts back from school, play dates in the holidays and even dropping in for a cuppa to keep me sane too!
It’s hard to be around someone who is ill; I get that, I can be boring when I’m tired from all the pain and medications. I can be quite funny too though from some of the medication! I say the wrong words, I repeat myself ALOT! I forget what you’ve told me and ask you the same questions or forget to ask you about something important. And I’ve even managed to send my ‘amazing friend’ a weird voice message without even knowing. However if I’m depressed, (which I have been diagnosed with, alongside anxiety) then I can be even more difficult to be around. I guess that is why we find out who our true friends are when we are ill. There are some ideas of things to say to people that are depressed such as in this article.
I don’t normally write with a negative attitude and I hope that this post isn’t too negative but sometimes things just need to be moaned about; not because they’re happening to me but because I’m being an advocate for increasing awareness about migraine and IIH and life with chronic illness. So please don’t use mental health conditions as adjectives, please don’t say you have a migraine unless you’ve been diagnosed by a medical professional and please don’t say these things to someone who is chronically Ill:
Everyone I have met who has a chronic illness, be it IIH, chronic migraine or any other condition; fights harder than anyone to just get up in the morning. They have usually tried every ‘cure’ or tried to change their habits or their environment if they can. I know because I have tried more than you can imagine and none have made a long lasting difference for me. So as a last word on this post, I just want to say that whilst you might do things that do give someone a migraine, unfortunately we sufferers, have to try and control our own triggers and can only ask you politely to not wear that perfume, or talk so loudly or to keep the blinds closed. However, if you do hear us say we that we are in too much pain to come out with you or to go to work, then if you just say that you believe us you will make our day one step easier to get through.
Thank you for reading this post!