Every once in a while my family will say something that is unsupportive, I know they mean no wrong by it, I assume they just don’t really know how to deal with it or what to say. In which cases, if you do not have positive things to say then just say “I don’t really know what to say.” I do it all the time when I don’t know the right words to say to my friends in the hospital because I know they do not want advice, they all have been dealing with it for so long they already know just as much as any M.D. on their condition. I am no different.
I know the risks with every medication, I know that yoga isn’t going to cure me, nor is a salad. I also know that the medications all have bad side effects, that’s just a thing with medications.
When it comes to medications, I am 18, I am not uneducated, I know how to weigh the pros and cons in comparison to how I feel without the medication versus the medication side effects. So when I have family guilting me, begging me not to try medication, or not to stay on medication, they have no idea the corner they push me into between my health, what doctors are saying, and then their unsupportive comments.
For example, when I was on humira at one point my mom and grandma told me that if I wanted to stay on humira that I wouldn’t do it with them and that I would have to go move in with my dad. My doctors were pushing me to up my dose and stay on the medication because at the time my Crohn’s had gotten worse and the medication wasn’t controlling it.
I know they were worried, but it made me feel like they were abandoning me. And I feel that same struggle again as the doctors push Entyvio.
My family is pushing for random alternative things to try and begging me to not do the Entyvio and playing emotional mind games with me and sending me links about all these natural things trying to sway me as if their links are the same as a Ph. D.
I love them, once again, do not mistake this venting in any way to me not loving my family full heartedly.
But all I hear from them is, “Well when is the doctor gonna reverse your ileostomy? You’ll feel much better without it.” When in comparison I feel better emotionally not having to spend most of my day in the bathroom. “When is your doctor gonna fix your fistulas?” When they’ve already done everything they can. “They don’t care about you, they just wanna make their money. Big Pharma. Etc.” “That medication will only mess you up more.” “You should try this.” “You should try that.” “Look at this MAP vaccine!” “Look at this document about cures!” “Get your hopes up for cures instead of trying any treatments available to make your quality of life better!” Obviously a bit paraphrased and maybe not word for word. But after hearing the same thing for YEARS, it gets overwhelming and tiresome.
Just today I was talking about how I was upset that I couldn’t do as much because my joints are always aching and in pain and so walking and doing things seems undesirable or I get grouchy and agitated later after pushing myself to the expectations of someone who is abled bodied. (This event was a harsh reminder of the limitations my body has now) And all people want to say is “You need to do more, train your body to adjust.” But with Ehlers Danlos Syndrome, it doesn’t work that way. My grandma says, “Well you can’t do anything about it.” But I could if my family wasn’t so against things and so against me making my own decisions essentially. They want me to look abled bodied, they want me to act abled bodied, they push me to be an adult and make my own life choices but when I do they chastise me for not making the decisions they want.
Have I contemplated a wheelchair for events? Yes, yes I have. Because do you know how amazing it would be to go around the event and not be slower than a snail and be in pain, to be able to move from place to place and talk to people and not have to choose between chatting and taking photos and being in pain later or sitting alone whilst everyone does their own things but at least I am not in pain.
I don’t think they take my pain seriously sometimes because I am not always doubled over crying. But I very seldom cry about pain ever anymore unless it is a 9. I’ve adjusted. I take a tramadol, I move on. Most days I stay on the couch and get called lazy by everyone when they do not feel the pressure I do with every step I take that feels like what I imagine stepping on glass might feel like. It feels like the more pressure I apply on a foot, it sends a shot of pain up my leg. You wouldn’t guess by looking at me though that I am in that much pain. And I try to seldom complain about it because if all I ever did was talk about it, while people might acknowledge it, they would get annoyed with me.
I try very hard. I sometimes won’t use my cane because I don’t wanna listen to my brother or his friends talk about how I don’t really need it and just want attention. So I choose to push myself or sit out of things completely. I chose to stay in the car instead of walk around with friends once, and you know what they did, they insisted I get a wheelchair instead. Meanwhile, I can’t even bring myself to ask most of the time when I’m with family, because for some reason I get this sense like they look down on me not pushing myself to abled bodied standards.
My friends encourage me to do whatever I need for my health, even if it’s getting a wagon for medieval events and decorating it like a dragon, they offer to pull the cart.
At hospitals I get guilted into siding against the doctor. When the doctor wanted to keep me longer for my NJ tube, my mom snapped at me and the doctors and basically put me at odds because she said she wasn’t staying and the doctors told me that it was life or death to stay. The one night I stayed at the hospital all by myself locally was the best night because I didn’t have my dad telling me I needed to “Stay off the internet.” Or my mom telling me she “Wasn’t going to take me to Cincinnati for everything.” When I tried to ease the tension between her and a nurse when they said it would take a month or longer to see the urologist about my kidney stones.
I feel at a loss here, I love my family, and they’re not always unsupportive, I have never had a hospital stay where I didn’t have my family with me and advocating for me, trying to do things to cheer me up when I got down, etc.
But sometimes I feel like I’m only disabled when it’s convenient for them, when they are looking for support. Again, do not get me wrong, I LOVE MY FAMILY, I really do, and I know they love me, and I know most of the time they would do anything for me.
But it is really, and pardon my language but I can’t find a better word for the situation, shitty when I can’t talk to my family about things that happen in therapy because I know they would shove it aside, or that I can’t talk to them about how I feel because my mom will either revert her emotions back on me, or my grandma will just meltdown and then I’ll feel bad, and my dad doesn’t really ever know what to say sometimes.
I know this isn’t 100% their fault because I get agitated too, I lose my cool, I make things stressful on them. Unlike them I can go to behavioral therapy and learn my emotions, how they manifest and how to deal with them; they don’t.
I haven’t made it to the point in therapy yet where I can verbally communicate my feelings to them, they blame my generation, they don’t know the truth of things or what’s going on inside my head and I can’t talk to them about me. I can’t talk to them about how I feel physically or emotionally because it gets downplayed, I feel.
Of course, this is just one side of the story. Maybe they feel differently and don’t know how else to put it, or like I said they haven’t learned how to project the emotions and thoughts they really feel so they just get agitated. It’s not just family, sometimes it’s even people in support groups (typically older people) who do not seem to understand that their comments are unsupportive.
I don’t blame them 100% because I think they just don’t know what to say, they often go straight to advice, some people go straight for the one-up (which by the way is not only annoying because it’s invalidating ones struggle but also because it’s not a competition being sick), they start praying for their god to cure you, or telling you you look nice or don’t look sick as if that makes it better.
Maybe there should be classes on supporting people with chronic illnesses Support 101, I’ve gathered a list from various spoonies and myself.
So here is my short class on Chronic Illness Support 101
-Don’t offer advice unless it was asked for
-Don’t bring religion into it unless they are religious. I don’t wanna hear if God has a plan for me or that god only gives me what we can handle.
-Don’t tell me I’ve looked good since I’ve lost weight and am now underweight. Don’t tell me I look weird if I’ve put on weight.
-Don’t say “You look fine.” -Lindsey Toothaker
-Don’t suggest me foods to eat, or tell me to eat more. That’s not how this works.
-I don’t care about your grandmother’s cousin’s sister’s boyfriend who had what I had and took this magical supplement and is “cured”.
-Don’t tag me in things talking about cures, I don’t hope anymore for a cure in my life time, if one comes about that will aid others in the future: fine. But my body has endured enough, and letting go of hope has been one of the best things I’ve ever done. You cannot be disappointed if you do not get your hopes up.
– Don’t tell me that the medication I am taking is bad for me. If it helps me, then it’s good for me.
-Don’t say you would rather die instead of having an ileostomy, because who the heck says that? Oh my gosh, that’s just rude.
– Just cause I call myself a cripple, doesn’t make it okay for other people to call me that.
– If someone tags me in one more post about medical marijuana I am gonna roll them up in paper and let someone smoke them.
-If I look upset, instead of assuming I’m “just depressed”: ask. Chances are I don’t feel good physically.
-Stop saying “She’s just blah” when I’m having a bad day, it invalidates everything I am going through because I’m not depressed, typically I am agitated and can’t find the words I want to used.
-Don’t push me to eat, I have a feeding tube for a reason. Doctors wouldn’t have insisted on putting down an NJ tube twice if it wasn’t necessary.
-Don’t tell people “The pain isn’t that bad.” -Bella Black
-Stop saying “Just cheer up, it’s not that bad.” or “Stop overreacting.” In regards to depression and Anxiety. -Skylar Scott Comptom
-Listen to actually autistic people.
-Don’t say “You Don’t Act Autistic” -Josh Wilkinson
-Don’t say “It could be worse, at least you’re not dead.” -Rebecca Haff
– Avoid “You’re too young to be disabled.” – Joshua Fischer
-Don’t tell people they need to lose weight or gain weight. -Joshua Fischer
-Stop saying things like “You could get a job if you weren’t so lazy. You just aren’t trying hard enough.” -Bella Black
-Enough with the “At least it’s not (insert condition that seems more severe to them).” -Melanie Nussbaum
-Things to avoid for anxiety and depression: “Lots have it worse/it could be worse”, “Smile”, “You’re fine”, “You have nothing to be sad about’, “Appreciate what you have”.
OR “Calm down”, “There’s nothing to be upset about”, “Stop getting emotional”, “You worry too much”, “Wow you’re uptight”. -Lacey Arvin
– In regards to being deaf avoid “You hear what/when you want to hear.”; “You have too good speech to be deaf.”; “You talk too good so you are faking your deafness.”: “You hear about such and such–everyone else knows it”. -Donna M. Williams
-Stop saying things like “You used to be able to do _______” or asking why they can’t do something now if they’ve done it before. -Megan Perrin
– Another thing is avoid saying “You should be used to it.” -Amber Goff
Instead try more supportive comments and actions such as:
-“I know I don’t understand exactly what you’re going through or how you feel, but if you need someone to talk to, I will listen and try to understand as best as I can.” -Amber Goff
-They don’t need to say they’re sorry or anything along the lines of pity, but rather than being judgmental, just taking us where we are at and understanding that we may not be 100% ‘there’. -Lindsey Toothaker
-With people who have disorders like depression or anxiety, its more about being supportive. Don’t tell them its all in their head, likely they know that. What we need is to be reassured we are safe and have support. That works best for anxiety. Depression is more about the support as well, letting us know that we are loved and people care. Even if it seems like we don’t believe the speaker, it helps more than i can say. Never make them feel silly or like its unimportant. -Skylar Scott Comptom
-“Don’t worry about it, we can meet any time.”, “I’ll always be there for you.”
I’d like someone to arrange to meet me instead of me doing all the arranging.
I’d like someone to meet at a place that is easy for me for once.
I’d like it if people weren’t embarrassed by my wheelchair -Cassie Gunn
-“Just being there.” -Brandy Schmidt
-Saying things like “I believe you.” Rather than dismissing or writing off how we feel.
-“I know you are trying.”
-Just offering to to come over and hang out or just checking in and asking how we are doing.
-Saying “I know this isn’t your fault.”
-“I know that I can’t completely know what you are going through, but I am here if you need to vent or just need a friend” something along those lines. Or “its okay not to be okay”. I hate when people pity me, even though I know it is coming from a good place. It just makes me feel awkward, but just knowing that people are there for me makes all the difference. -Rebecca Haff
-If you don’t understand something, just ask questions, don’t assume. Sometimes asking questions “…Means that they care enough to learn about my illnesses.” -Rebecca Haff
And if you have no idea what to say, or what to do, that’s fine. Just say “I wish I knew what to say, but I don’t. I hope you know that I care about you and I’m here for you though.”
Again, I love my family and I couldn’t ask for a better family in the world. And this isn’t exclusive to just family, it happens with friends’, strangers, and people in support groups even can be extremely unsupportive sometimes.
I needed to vent, but I also wanted to turn this into an opportunity to educate people on what not to say and what you can say.
I love ALL of you guys, even if you have said something like this before, it doesn’t make you a bad person, you probably didn’t know. But the first step is acknowledging the issue and then taking the steps to improve things. And it won’t happen over night, we all slip up and make mistakes, I even say unsupportive things from time to time and have to catch myself and apologize or just admit that I have no idea what to say but I’m willing to listen. Sometimes that’s all it takes.