In my last post, I talked about a few things that you should never say to a disabled person and there is so much that you should never say that the list could go on forever. There is no shortness of things you shouldn’t say to disabled people because there will always be ableism but what there isn’t enough of is kind thoughts that show you support someone’s disability and chronic pain. I think sometimes abled people aren’t thinking or are trying to be rude because they truly believe they are superior to disabled people but I don’t think that is the case every time and sometimes people just don’t know how to talk to us. The disabled and chronically ill community are not short of rude comments because that is all we hear but what we could use more of is thoughtful comments that show you may not fully understand our disabilities but are doing what you can to be supportive. In this post, I am going to talk about some things you need to start saying to the disabled and chronically ill community that is not said enough.
I can’t see or understand your pain but I believe it’s real- The problem with chronic pain is that it’s invisible and you have no idea how much someone is struggling. People with chronic pain often feel misunderstood because you can’t see invisible pain and people tend to not believe things you cannot see. Sometimes people will tell chronic pain sufferers that what they are experiencing is in their head and not real pain because they don’t look like they are in pain which hurts us emotionally. Many chronic pain sufferers feel alone even within their families because even people we are close to sometimes have a hard time believing that it’s possible to experience the amount of pain we say we do. You will never be able to fully understand a disability you do not have and that is okay but the most supportive thing you can tell someone is that you believe what they are going through is real. Chronic sufferers are always told that they are liars and that their pain is their imagination because we get so good at hiding pain but what we are not told enough is that you believe us even if you have a hard time understanding our pain.
It’s okay to seek therapy for your mental health- Mental illness is part of the world we live in and is more common amongst disabled people because you deal with so much but sadly not everyone will choose to get help because their families have expressed they don’t believe in therapy. Families have a huge impact on the types of treatment a disabled person will get for themselves because if someone you are close to has expressed they don’t believe in therapy chances are disabled people won’t get it and will suffer in silence. If someone has expressed they need therapy instead of questioning it and telling them meditation is the answer be supportive of their decision to get professional help. Some people need therapy to make progress in their mental health but if people you are close to are not supportive of that decision chances are you will not get it and no one should have to suffer in silence.
It’s okay if you need medication to function-If I had a dollar for all the times someone told me that if I stopped taking my medication and drank more green juice to cure myself I’d be so rich. When it comes to taking medication there is so much shame because people don’t see the good in our medication and don’t realize our medication is not the problem but is the solution for less pain. If you don’t understand why someone is taking a certain medication that is okay but if you are not their doctor you should never tell them to stop taking it because it’s dangerous and some people might listen to you and stop taking life-saving medication if their friends told them they should. Encourage people to take their medication and that there is no shame if you need a few extra pills to function because disabled people need to hear that sometimes.
It’s okay if you feel negative sometimes- Disabled people often are expected to be positive all the time and when we are not abled people are shocked and will be like stop being so negative! Disabled people try to be as positive as they can but living with a disability is hard and there are going to be days we are not positive but in fact the opposite of that. Instead of blowing up our newsfeed with inspirational quotes let them know that what they are feeling is valid whether it’s positive or negative. Some days you are not going to feel positive and there is nothing I hate more than when I am about to have a surgery where I am being slightly negative and someone tell me to be more positive. This is toxic positivity which is very harmful and not helpful to disabled people because it’s an unrealistic expectation to be positive all the time! I don’t know a lot of people who are always positive so why are disabled people expected to act differently? If anything you should expect us to be more negative because of all the frustrations we deal with in our everyday life.
I don’t know what causes your pain but it must be hard- Disabled people face a lot of ableism in everyday life but I think a lot of it comes in health care. Doctors often don’t know how to talk to disabled people because you can’t teach that in med school and doctors often use the wrong terms which negatively impacts disabled people so we don’t ever want to go unless we are very ill or our insurance is making us have our yearly physical. A big problem I see in healthcare is when doctors don’t understand what is causing someone’s pain because test results are normal and they will say sorry you are going to have to deal with it. I recognize that doctors don’t have the answer for every single medical problem and I don’t expect them to but if test results are coming back normal and you don’t know what is causing someone’s pain there are more sensitive ways to give your patients bad news that do not utter the words you are going to have to deal with it. Whenever I hear doctor’s tell pain patients to deal with it I want to say okay next time you are in a lot of pain I’ll tell you to deal with it and see how you feel about that? Some people don’t feel that their doctor doesn’t listen or care and I do think that is true some of the time and in those instances, you should find a new doctor but sometimes I think the way doctors give patients bad news can come off as a little insensitive. A disability affects the person experiencing it more than it will to the person prescribing all the medication and treating it so it’s really important how you say things. Instead of saying you are going to have to deal with it when you don’t have answers try something like I am sorry you are going through this but I don’t know what to do next. Patients will hold a higher respect for you when you use a better choice of words because it shows you care and aren’t just giving up on someone.
Disabled people are not lacking in rude comments because every time I turn around someone is either making fun of my disability or telling me how to cure it. The disabled community doesn’t need more ableist comments because we get enough of that on a regular basis and what we need is more support from abled people because support is everything and I don’t think there is enough of it. People are always telling us that if we drank more green juice we will be cured but what I don’t hear a lot of is that we are doing enough and it’s okay to be frustrated with your disability. Society wants us all to believe that being disabled is a terribly bad thing that we need to change and because of that, there are so many more people claiming cures and not enough support that helps disabled people through everyday challenges. In some ways, I am lucky to have a visible disability and a supportive family that believes in my disability because when you can see the struggles people don’t tend to question your everyday challenges. Some disabled people don’t have that kind of support and need to hear that what they are doing is enough. What do you think needs to be said more to the disabled community?
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Excellent follow up to your last post. I’d love to hear these comments, especially “I believe it’s real.” Oh, for people to believe!
My Rockin Disabled Life
Thank you and yeah hearing people say that they believe you even if it’s difficult to see pain would be a gamechanger!