I’ve discussed on my blog many times before that I suffer from chronic pain; I have Endometriosis and chronic migraines. The other day, I had a friend tell me, “if you’re in pain, then just stay home because you just bring everybody down”, now at first, it didn’t really bother me. It wasn’t until a few weeks later that the comment came back to the surface and really hit me hard. I am in pain every single day; some days are better than others of course but I don’t know what it’s like to live without pain any more. If I’m going through a flare-up, I hermit for a while until it passes and then I return to my normal routine. Sometimes I’ll go out and be social but I always try to seize the day as best I can. But to be told to ‘stay home’ whenever I’m in pain would mean I would never leave my house.
I completely understand that living with chronic pain affects the lives of others around me. I never see myself as ‘sick’ or ‘ill’ but on paper that’s kind of what I am. Despite that, I never want my illness to define me or put limits onto my dreams and goals. Sure it might take me a bit longer to reach them or I might need to take a few different paths but I will get there. If a friend gets the flu, everyone is really understanding because it’s not a common occurrence and happens sporadically. It’s also something that everyone has gotten in their life so they can sympathise with the symptoms and really support and offer help where they know it’s needed. Having a different kind of chronic illness changes everything; not many people know what it’s like, no one really know whats to do about it and in most cases, nothing can be done. I know its hard to see a friend suffer and not be able to do something, trust me, it’s hard for me too because I don’t want my friends to feel helpless. But I don’t really need much, I just need understanding and patience. Sometimes just a good laugh or a cup of tea can do wonders as it makes me feel that things are normal and ok; I don’t need you to ‘fix’ me and I don’t need people thinking they need to avoid me.
I can’t help how you feel when you’re around me. I don’t want you to feel bad for me or helpless. I really don’t need you to ‘cure’ me, so your support and a good laugh are all I need. And if you do feel ‘down’ when you’re around me and I’m in pain, that’s completely on you and only you can change that if you wish. If you’re a friend and you ask me how I’m feeling, I will tell you honestly because you’re a friend and I don’t have to be polite and lie to you that everything is fine. That’s a big thing for me, if you’re an acquaintance, I’ll just be polite and say “I’m fine thanks” but if you’re a friend, I’ll be open and honest. When I tell my friends I’m having a bad pain day, some acknowledge it but then just continue the conversation like normal. For me, that’s the best response, you’ve acknowledged but you haven’t dwelled on it, made me feel bad about it, or told me that I’ve made you feel bad or down. Nothing about me or who I am changed; when I’m in pain I can still laugh, I can still joke and I can still be a friend and do fun things together. I can’t help how you react to situations and I also don’t want to be blamed for your response to a situation.
Now I’m very lucky to have the most understanding and amazing partner in the world; he truly looks after me, supports me and never makes me feel as though I can’t do things just because of pain. Not everyone can do that though. Keeping friendships is difficult; you can’t always come out, you miss social events, milestones and fun things such as concerts because a migraine doesn’t care if you bought your tickets months in advanced. Eventually, you stop receiving invites or some assume that you just keep making excuses. If you have a friend with chronic pain or illness, please believe them when they tell you how they feel. It takes a lot of patience and understanding to have a friend like me, trust me, I annoy myself some days, but just because of a card I’ve been dealt doesn’t mean I should be left alone with no friends. I don’t need everyone to be the greatest person in the world and rub my feet and dote on me, I just need you to treat me like normal because I said I was in pain, not dead.
I can’t change the way people react to my situation; I don’t want pity or sympathy or extra attention, I kind of just want to be treated normally as though I didn’t have pain. It did make me feel bad when I was told my pain brings others down; I’m a generally happy and bubbly person. I love to joke around, be silly and laugh a lot; I am a constant string of terrible jokes and will always try to cheer people up. I don’t want anyone to feel bad or down because I’m in pain. The day the comment was made, I had just spent 17 days in a row with migraines so I wasn’t my most bubbly self. Although I chatted and stayed engaged in the conversations around me, I was a bit quieter. I didn’t think I was making a big deal about anything, I didn’t mention my pain or discomfort at all and only said I was doing ok when asked how I was going. To be honest, I was more tired than anything. It’s not easy to sleep when your nauseous and have been sick for close to three weeks straight.
To be told I was bringing everyone down made me feel awful. Was I really that tired looking? When I’m with friends I’m a lot more open and honest about things and share a lot, that includes how I’m actually feeling. I won’t pretend everything is just fine and dandy if it’s not; I would want all my friends to feel comfortable enough to share how they actually feel even if it wasn’t happy. We all have bad days, your friends shouldn’t feel the need to hide that. I instantly thought I should have just pretended that everything was fine, that I was feeling great and pushed myself as much as I could to convince people I was ok even when I wasn’t. It’s what I normally do around people. But to be told I was a downer really started to affect me the more I thought on it. It takes a while for me to open up to people; you need to test the waters and see how it all goes instead of jumping in and getting hurt. So for me to show my honest self, being tired after being in pain for 17 days, was a very vulnerable thing for me to do. I am now really self-conscious of myself around my friends and just pretend everything is ok. I’ve clammed up again and I don’t want to open up for a while.
If I confide in you and tell you about my life and the things in it, including the fact that I have Endo and migraines, that means you’re a friend and I trust you enough to open up and share with you something very personal and private. I’m generally a private person, it’s a safety thing, so some things about me are not worth mentioning and I don’t always know what people want me to share about my life (did you know I think celery is disgusting and an abomination to the vegetable kingdom?). It’s not easy for me to know what to share and personally, I don’t think I’m that interesting so I don’t go into detail about my life. By opening up and sharing about my pain and then being told that my pain brings down other people just makes me feel that this is why it’s safer to not share anything at all. If I pretended to be fine, my friend would have been fine.
I’m now torn, if my friend goes back on this statement, are they just doing that because they want me to open up and not feel bad in future, but will they now just pretend that they’re ok with me being in pain to not upset me which will only upset me more because now I feel bad that they have to lie…. oh my gosh it’s a vicious cycle and I don’t even know if that made sense… nope it didn’t. At all. What I think I’m blabbing about is that, after years of being a private person and finally openeing up, such statements as “if you’re in pain, then just stay home because you just bring everybody down”, make me not willing to share much personal stuff in the future. It feels safer inside my bubble and I’m quite used to sacrificing my own joy for the sake of other peoples (yes I’m ok with that).
By saying you want me to stay home when I’m in pain, means you want me to change to suit you. You don’t want to feel down but neither do I. I don’t want to stay home when I’m in pain because I don’t want to be a hermit for the rest of my life and never leave my house. I can do normal things like normal people and I’ve spent many years of my life putting on a brave face and telling people everything is ok when it’s not. I can’t help how my pain makes you feel and I am sorry if it does bring you down. But my alternative is to lie to you and as a close friend, that’s not something I want to do.
My life isn’t simple or easy and the Endo and migraines just add more fuel to that fire, but I don’t want to be told to stay at home because of something I can’t change. My life is still worth living and your reactions are your own. If you feel down because of my pain, that’s not my fault and I’m sorry that I can’t change who I am. This post is me sharing a thought process and opening up a little more about something that’s been a huge factor in my life for a long time. I’ve had so many people reach out to me over the years to share their own experiences with Endo and migraines and I’ve heard similar issues before. I’m not calling anyone out, I just want others in the same boat as me to stop trying to make the lives of those around you easier when your suffering. You don’t need to pretend to make others happy when it’s their choice how they react. I know this may ruffle some feathers but after many girls this month have has similar issues, this article is more for them.
Please Note: I’ve had chronic pain for over 15 years; I’ve tried many different things, therapies, diets etc but nothing has really changed anything. Please remember all bodies and conditions are different so something that worked for you or a friend may not work for me. I appreciate all suggestions that may help but honestly, I have heard so many weird and wonderful ‘cures’ that I just don’t want to hear anymore. Sorry if this comes across as rude but every time I mention my pain, I get flooded with suggestions and MLM products in particular; I have brought some suggestions to my doctor but none are suited to me or my type of illness. Please respect my request and know I appreciate your concern and kindness. Thank you.
Note: This is not a sponsored post. All opinions and thoughts expressed are solely my own and not influenced in any way.