Maybe because of how drained I feel lately or because I’ve had some really ridiculous phone calls and in person conversations over the last few weeks, I don’t know but I feel even more disconnected from the people around me than before. Like people just don’t get me or worse, they don’t want to or just don’t care anymore.
Not because I’m a punk/goth/metal head teenager raging around with angst, expression and a ‘girl power’ attitude (at least not anymore 😛 ). All things considered, I generally come off as perky, active, sarcastic and fun….. to those people who don’t already know I am chronically ill.
The people that have found out, whether in the past years during my struggle for diagnosis and relief or more recent ones after my most my lupus diagnosis now treat me ‘with care’. Either that or it’s the TOPIC OF THE HOUR and I get to spend an evening discussing all I know or worse all they think they know of miracle cures or “maybe it’s just aspartame?”
Here is a list of things I wish the people around me would do instead of avoid me completely or obsess over what they think they know about what I have.
- I still want to spend time with you.
I do actually feel like I need to be told this. I don’t want my presence bumming people out, especially when they’re doing something I can’t participate in during a flare (like tobogganing, sledding, ice skating or long/late parties). Just because I can’t participate doesn’t mean I don’t want to watch, or hear about it or be there for part of it. I want to spend time with you and I need to know you feel the same way even though I may in pain or ill.
2. I know you’re doing the best you can. Don’t try and push yourself.
Acknowledgement of what I CAN do with no pressure to do more means a lot to me. I know you’re aware that I’m taking my time or avoiding certain activities or even having to cancel things because I don’t feel well. Being the type A personality I am, I have a tendency to push myself too far to get things done or to be able to do everything everyone else is able to. You noticing and reminding me that I’m doing enough and that I don’t have to do more, would help me feel cared for and understood.
3. I completely understand. Take care and hope you feel better soon.
It’s so easy for someone to say when they find out someone has food poisoning, a broken leg or any other “sick note” kind of health complication. Cancelling plans when people can see or understand what is wrong is still a bummer but people generally understand. When people are chronically ill and have to cancel plans for things like fatigue, stiffness, muscle or joint pain etc. it just doesn’t seem to be ‘enough’ of a reason to you. I deal with it every day so I must be used to it, or lazy or just don’t feel like coming/staying at your event.
You don’t have to be fine with it, trust me, it bums me out to I have to miss out. I do appreciate when you understand that I would if I could and accept that today I just can’t.
4. What is something we CAN do?
Generally when I have to cancel or turn down plans because I can’t do something it doesn’t mean I can’t do anything. I may not be able to go tubing, but I could sit for a picnic and chat. I may not be able to go play a pick up hockey game, but I can have fun watching a game with snacks and darts. You being open to doing something different or asking me what my body can handle right now means that we still can spend quality time together having fun.
5. Is there anything I can do to help?
Of course there will be times that no matter what, I don’t feel up for anything. Please don’t assume this means I need a nurse maid out of you but also don’t assume that I don’t need a little extra help. ASK. Anything from dropping off a jug of milk because we ran out and I can’t get to the store, coming over to give company to the kids and I or simply just letting me vent on the phone (and possibly cry) for a bit because I need to let it out. I won’t ask you for these things on my own, maybe I’m too proud or maybe I just don’t want you to think I want to “use” our friendship. If you offer, I will feel much more comfortable asking for what I need help with.
6. I trust you and your doctors know what you’re doing….. OR nothing.
Along the lines of what actually helps, telling me of a miracle supplement or an accidental cause and promising me if I just follow it or stop it I’ll get better DOESN’T HELP. It not only makes me feel like you’re trying to invalidate my pain, it could make things even worse. There is a lot of misinformation out there, especially when you’re just scrolling down facebook and hitting the blogs about the newest super-food or most recent toxicity study. Don’t you think if any of these wacky ideas actually had more merit, I’d already be right on that bandwagon?
Sure if I’m in the right mood and you’re coming forward with it for a healthy debate, I’m sure up for discussing all sorts of things but if you’re going to bring something up because you saw/heard somewhere this something bla bla that could cure me…. just keep it to yourself. Trust that my doctors are doing their best and that I have done my research, after all I live with this every day.
7. Wish you were here!
I think you tend to not mention it when you are going somewhere I couldn’t or doing something I can’t. Like if you mention it, it will hurt my feelings. Please don’t walk on eggshells for me. Tell me how much fun the concert was or the ski trip or the birthday party etc. Tell me that you wish I could have been there. Show me pictures so I can imagine what it was like. Yes it might be bitter-sweet for me, but it lets me be happy and excited for YOU and lets me know you still thought of me. I still want to know about what fun you are having and the exciting things going on in your life.
8. I don’t get it.
I know I said before I want you to say that you understand, but only if you actually do. Lupus, IBS, depression and anxiety disorders are not rare conditions, but they are extremely misunderstood. If you don’t understand what it is I have or how it effects me, ask. I don’t mind talking about it once in a while if you actually want to hear it. If me explaining it to you can help you sympathize. Not just with me but for anyone suffering from chronic and invisible illnesses. I live in a world that you can’t completely understand, but if you genuinely want to know, I can try to explain it and appreciate that you care enough to try and ‘get it’.
9. Do you remember back when?
I can’t speak for everyone with a chronic illness here, I know that sometimes looking back can be bitter-sweet, but I love reminiscing. I want to talk about high school, or when the kids were babies or when I was able to do all sorts of exciting things. Don’t feel bad bringing up the ‘healthier days’ with me. I enjoy it and when my brain fog gets bad, honestly it’s a nice way to remember the past with new definition. For only 28 years of life, I’ve lived a lot and talking about it reminds me of that and all the better is that I got to experience some of that with you.
10. I love you.
Ok, so not really specific to my chronic illnesses really I just think people aren’t as expressive with feelings as they should be. Life can be short, life can be mean and evil and downright fucked up sometimes. To know that we have love around us is something EVERYONE needs. Sometimes when my illness is particularly bad, I feel isolated, scared and utterly unloved. Being reminded by my loved ones that you also still love me can make or break my day or even week. Depression especially can play nasty little tricks on the brain, lying to me in silence that the world is against me and and all people feel is that I am a burden or dead weight in their life. I “know” that this is all in my head, but that feeling isn’t any less real. You expressing feelings bursts through those lies and proves that the reality is that I have a loving and supportive group of people in my life.
So there it is. My list of things I wish the people in my life would say. What about you? Do you have anything you wish others around you would say? Or things you wish they didn’t?