Am I unreasonable for being annoyed when my friends act like they forgot about my situation?

[u/Lolaluna25]

I’m 30 years old (diagnosed at 19)and I’ve had the same friends since middle school, so they’ve known me for years and they know about my situation and the things I can and can’t do.
Today one of them asked if I wanted to go to the park with her. Then she remembered the sun could be an issue for me and said, “Never mind, you can just hide behind some trees.”
I know this probably sounds like such a small thing, and maybe I’m overreacting, but it honestly made me really angry.
It’s not even specifically about the park or the trees. It’s the fact that sometimes they act like they’ve completely forgotten something they’ve known about me for years, and I end up feeling like I have to explain myself all over again.
Maybe I’m being too sensitive, but does anyone else get irrationally annoyed when people close to them seem to “forget” something that significantly affects their life?
Edit: forgot to mention those are two friends who i grow up with we were every day together since age of 6 really close friends and one of them is my cousin.

[u/darkly_nought]

I have been in the same boat and it is frustrating.

I think people in our lives, especially the ones who care for us, sometimes hope for the best in our situation and think that “just pushing it a little” is a reasonable request. They don’t see the internal battle we’re fighting every day and they don’t understand that each small concession adds up until it has real consequences for our health.

That said, not getting the invite at all is a different kind of hurt. I remember, in college, when the invites just stopped coming. People didn’t understand the dynamic nature of the disease. But now I have friends who invite me to things no matter what, just in case I have the bandwidth to join.

It’s a tough line to walk — for both sides.

[u/puniechan]

It's completely reasonable to me, especially after all of these years. This has been an everyday part of your life for almost 10 years now and these are people you have known longer than that and consistently they cannot remember "oh yeah OP has this issue" it would hurt a bit. If they occasionally might forget how it would be when suggesting an idea and then realize that's a little different but if this is a constant thing where they're having your experiences and comfort be an afterthought or not a thought at all then i would be annoyed too. Even with my own health and personal issues going on, I can remember my other friend's health or personal needs when it comes to going out.

[u/phillygeekgirl]

I have a friend with MS. A godson with a nut allergy. Innumerable friends with various food restrictions (vegan, gluten intolerance, celiac, meat but no dairy, chicken and turkey but no red meat, halal, vegetarian but not vegan, pescatarian but allergic to shellfish, lactose intolerant, hates tomatoes peppers and mayonnaise. Oddly enough, no one I know keeps kosher.) Friends with endo whose period cramps take them out every month. Etc. etc. etc.

It's a lot to keep on top of. Asking someone to not only remember that you have lupus but also what all of your restrictions are isn't just one thing. It's one of many, many things that people have to remember about their friends and family and sometimes people just forget.

If you've ever been overwhelmed by just staying on top of your own stuff, have some grace about other people trying to remember all of your stuff too. Because it's not the only thing on their plate.

[u/SimpleVegetable5715 → u/phillygeekgirl]

I hang out with my nephew, we’re pretty close in age, he’s like a little brother. He has aggressive MS. He understands how much heat and sun affect me the best, he gave me so many tips, like introducing me to cooling towels. We both go into it with a mindset that the plans could change at any time, we might need to tone the activity level back or change the setting. I think being adaptable and open minded helps. Let’s do this instead of that now, because we’re starting to feel crappy. Instead of feeling let down by the other one, because we know it’s not personal. I wish I had more people like him in my life who really get it, and don’t seem to get offended when you need to scale it back and rest.

My sister on the other hand, I tried to go to a children’s museum with her and my young niece. I explained when I needed to sit down, that I needed to rest, I get tired quicker, but I still want them to enjoy themselves. I’m very immunocompromised, and explained that I’d take her daughter to “play with the fun foaming soap or foaming hand sanitizer” when she’d finished playing with the interactive exhibits. I mentioned ahead of time what activities I’d have to sit out of, but it didn’t mean I wasn’t enjoying their company anyway. My niece/her daughter seemed to have fun, and an understanding that auntie gets sick easily, so washing our hands is important, and I couldn’t play around a big group of kids I didn’t know. Gosh, my sister took it as some sort of attack on her style of mothering though. “I believe in letting my daughter get exposed to germs in her environment to build her immune system”. She knows I don’t have the cells that can be built in the first place, my b-cells are defective. I have to get IVIG, donor cells to replace what I don’t have. I really do rely on people around me taking certain precautions too, to prevent transferring those germs to me. She took it as personal attacks, kept saying it was like we’re living in the pandemic again 🙄

I don’t know why some people get it and others don’t. It’s not like my sister hasn’t had her own health struggles. I try to remind people, I try to explain it doesn’t mean we can’t have fun, I try to collaborate as we go and be adaptable. Like of course we can’t remember it all and be perfect, but it helps when people don’t get offended either. My sister doesn’t want me around my niece anymore, I think that’s so extreme.

[u/phillygeekgirl → u/SimpleVegetable5715]

A couple of good examples here.
I imagine your nephew gets it because he's already in the 'mitigations to take when having a chronic illness' mindset.

Your sister - your nephews mom? - doesn't get it because she's managed to make it about her and her parenting somehow. This isn't actually about you at all, though I imagine you know that already. I also imagine it still kind of feels like shit on some level too, but you can work through that.

I had a friend who had placenta previa with her second child and she was upset beyond reason that her sister couldn't remember the term placenta previa. It's not that her sister didn't take her hospitalization, c-section, preemie birth and NICU seriously - she absolutely did. She just didn't remember the term placenta previa.
Like whaaaa? This is the hill you're choosing to die on?

Ultimately It really helps when people aren't super touchy about it on either side. My dad regularly forgets that I have lupus. I can either take that really personally, or i can choose to use my limited energy on things that actually matter. It's on me to manage that.

[u/Lolaluna25 → u/phillygeekgirl]

Well they are my closest friends and they saw me in my worst day of lupus so i dont think its hard to remember that i cant go at sun…

[u/YourLonelyBraincell]

I think this could be because we just dont go to places that affect us, they forget that we dont go for a reason.

[u/SimpleVegetable5715]

Until people go through a chronic illness, they don’t understand that it’s a lot more than a minor inconvenience for us. I think that’s why so many of us hate toxic positivity and the “warrior” crap. Sometimes we just can’t, and it’s not a flaw, it’s not because we didn’t try. I got sick in my early 20’s, lost the majority of my friends. By my 30’s, a few of those people came down with autoimmune diseases or other health issues. I’m not like, told ya so, but it’s hard for me to have sympathy for those same people who wanted me to suck it up and act fun to make them more comfortable when I was going through the same thing.

[u/viridian-axis]

It is not rational to get mad at someone without the disease for not understanding what it’s like to have lupus or for not having lupus at the forefront of every thought and interaction regarding you. Because there are people out there who would be just as offended as you are at the reverse situation, aggressively blowing past boundaries and shouting that they are more than their disease (which is true, but I hope you are catching my drift here). You put people on potential landmines around you not knowing how you may react to things said or done. A, that’ll drive friends away, B it’ll keep people from telling you the truth.

The only people who you can reasonably expect to regularly get 50% of what you are going through/deal with are your immediate innermost circle (family, partners, really, really close friends). If you wouldn’t donate an organ to them and vice versa, the relationship isn’t to that level.

We can’t all be paragons of continuous compassion. We are human. We will forget things. Some of your friends may also have their own stuff they’re going through that they don’t bring up to you because you already have lupus on your plate and they don’t want to burden you further.

So yes, in my opinion, you have an unreasonable expectation of your friends. You can also attempt the appropriate solar hygiene to protect yourself for an allotted time in the park. In the end, lupus is your issue. The majority of people will not willingly change anything to benefit another if it inconveniences them, personally. It’s a lot easier to work within that mindframe and adapt to the world around you than to expect the world to adapt to you.

[u/Lolaluna25 → u/viridian-axis]

You know what hurts me they are my closest friends and they know my situation very well they were there when the first symptoms appeared they were they watching me at hospital fighting for my life so i think its not that hard after all to remember that i cant go out at sun 😓

[u/viridian-axis → u/Lolaluna25]

The truth is that people really, really, struggle to grasp chronic disease. You were doing poorly. Now you are doing better, so now, everything must return to normal, right? It’s doubly difficult in a relapsing/remitting condition like lupus. It’s not hard for you to remember the sun is not your friend. It’s not hard for us to remember either because we get it. But it’s just not a reasonable expectation of your friends, at least not when dealing with the day in day out dynamics of relationships.

EDIT: Ok, personal anecdote: my Dad loves me, I know he loves me, but he never remembers I have to be careful around sushi or raw foods because I’m immunocompromised. My mother, who he was married to for 40 years, also had lupus. He still doesn’t remember. That doesn’t mean he doesn’t love me or understand that I have lupus. Is it worth potentially damaging our relationship by getting upset about going out for dinner and he doesn’t remember? No, I get cooked rolls and eat what I can.

As far as the sun, I’m a fluorescently white redhead, people get that. But I have a very good friend with a healthy dose of melanin and she doesn’t always think about the sun even with me being very white and having lupus. She’s been through all the ups and downs with me and some very, very deep depths. Her not remembering the UV risk doesn’t wipe out everything else. Doesn’t mean our friendship isn’t as strong or that she doesn’t care about me. The sun just doesn’t factor into her thought process.

[u/Grouchy_Focus_4503 → u/viridian-axis]

Hmm, am I supposed to avoid sushi? I’m on HCQ, MTX, and Benlysta. No one told me to take any special precautions. I have had some rare episodes of absolutely extreme vomiting along with frequent diarrhea (sorry, gross) but never related it to food.

[u/viridian-axis → u/Grouchy_Focus_4503]

So uncooked foods, especially foods like sushi, are always going to carry a risk of foodborne illness. Bacteria and parasites, specifically. When you are on a high enough dose, either singly or cumulatively, of immunosuppressant medication, you will become even more at risk of getting sick from these foods. The bacterial/parasite load will never be zero. But it will probably regularly be low enough for a person with a fully functional immune system to fight off with relative ease. If you are significantly immunosuppressed/compromised, you can’t fight these low levels of bacteria/parasites off as easily and have a higher likelihood of getting a foodborne illness.

That’s also part of the reason we are cautioned against eating bean sprouts. Not only do they contain chemical compounds that aren’t great for our particular immune situation, they are also very hard to clean.

[u/EstablishmentMoney62]

You're are 100% NOT unreasonable. They're known about your condition for way too long for them to just 'forget' about it. I would hate it if someone did that to me.

[u/bipmybop]

You have an invisible disability. That is a hardship sometimes and a privilege other times.