There are a lot of times people, with out even meaning to, can really negatively effect you with the things they say about your Chronic Illness.
This is going to be my summary and interpretation of this particular blog post, what was shared to me during my diagnosis of Sero-Negative Rheumatoid Arthritis
This referring blog post shares "100 Ways to Show Up for People with Chronic Illness"
I'm going to highlight the ones I felt were most important. I will talk about why I screamed "OMG THIS" when I read it for the first time.
(Some of them are related so I may group them together when I quote them)
"Able-bodiedness and health are privileges. Recognize that. In other words: Just because you have the physical capacity to do something or live a certain lifestyle doesn’t mean everyone does, so don’t expect them to."
Everyone is born differently, we come pre-wired with physical and mental differences that make up who we are as human beings. Whats easy for one person may be incredibly challenging to another, we may all be human, but we are not all created equal. If you watch Performing Arts, Sports or the Olympics, its a spectacle of absolutely incredible things the human form is capable of. Its inspiring and fascinating. But do not think that because we are of the same species that everyone is capable of doing those things if they "try hard enough"
"Read up on different chronic illnesses, especially those affecting people close to you. Educating friends and family about your condition can be exhausting and annoying when information is readily available. Also, having a chronic illness can make you feel like an alien. Having close ones who know what’s up can be a real comfort."
If someone takes 2 minutes to google the name of your condition when you mention it, it really helps. This person has probably explained their condition several times to people who mean well and are genuinely curious. But they are probably tired of doing it. One less time explaining it helps more than you think.
"Google is definitely your friend, but make sure that you are checking your sources. There are many scam websites and fad diet books that spread false information to take advantage of people with chronic illness. But don't start acting like you are an expert by trying to educate someone about their condition. They may talk to their doctor more than you do to your BFF."
Speaking of Google, be careful. Lots of what is posted on the internet is crap, and people are trying to take advantage of you for your money. People will say that about doctors too, but someone who paid thousands of dollars to go to med school and thousands of hours of learning put in a lot more effort than some idiot with a blog or a website did. So if anyone deserves your money, its them. Especially since they might actually know how to help you. They also have a consequence and liability for giving you false information, the internet doesn't. So keep that in mind.
"Don't ever question the legitimacy or severity of someone’s illness. Comments like, “I heard that was psychological,” or, “Everyone seems to have an autoimmune disease nowadays,” are extremely insulting. Sit down. Know that not having a diagnosis does not mean someone is faking it. Many chronic illnesses take years to pin down and some symptoms never add up to a neat diagnosis. That doesn't mean that the person experiencing them is not suffering. Keep in mind that even doctors and researchers don't have it all figured out when it comes to chronic illness. That doesn’t mean certain illnesses aren’t real, just that they are not yet classified. All medical conditions weren’t defined at some point—think about it."
I said this in my last blog post when I told the story of my diagnosis, we are advanced but not that advanced. We don't know everything about our bodies and our environments yet. My diagnosis took so long because I have Sero-Negative Rheumatoid Arthritis. Sero-Negative means the RF marker (Rheumatoid Factor) does not show up in my blood work. It doesn't mean its not there. It doesn't mean I'm not in an incredible amount of pain. Humans are very vain, we really have too much pride to accept that we don't have all the answers. That's why we invented, yes I said invented, religion. We cant accept the notion that "we don't know" Well we had better learn to soon. There is so much we still don't know, and we will be a lot more receptive to growth if we stop acting like we know it all already.
Never tell someone with a chronic illness that they look “tired” or “sick” as a way of affirming them. That’s not the kind of affirmation we need, thanks. It's more than OK to tell someone with a chronic illness that they look good. Who doesn't like to hear that? But don't say, “But you look so great!” when someone is telling you they don’t feel well. It’s invalidating. Saying “But you look healthy!” is even worse, obviously. Also, please don’t compliment someone with a chronic illness on weight gained or lost as a result of symptoms or treatments.
This is really important. We don't want to be identified by our illness and most of the time, we don't want to talk very much about it. We don't want our symptoms to be affirmed or invalidated. We are simply just talking about how we feel, probably, only because you asked. Less (dialogue) is more, so please just listen, and don't feel like you have to solve this for us. Just make us feel like its a safe place for us to ask for help with anything if we need to.
"In general, don’t assume that you know whether or not someone is well or healthy based on the way they look. Many people have chronic illnesses with symptoms you can’t see. Know that just because you've seen someone with a chronic illness be active or take on many projects, that doesn’t mean that they were not experiencing symptoms at that time or that they can constantly keep up that level of activity. Don’t say things like, “But you were fine just the other day!” With some chronic illnesses, there are periods of remission and flares. For others, that distinction isn’t clear and symptoms can fluctuate within short periods of time."
I wish I had periods of remission! The reason I probably didn't was because I was constantly damaging and inflaming the area through the simple task of walking to and from work every day. I was later told by my physiotherapist I should not have been walking anywhere. Its too high impact and load bearing on my joints the way they were. However, we didn't know that at the time, I didn't have my diagnosis yet. However, it was expected of me to walk to work every day, to walk home with my heavy groceries, to lift heavy things at work. I didn't have a neat diagnosis to validate why I couldn't do those things. Whether you know why or not, believe people when they say they cant do something. Even the people you think are just too lazy, and who might be just trying to get out of doing it might actually be in pain. There are fewer people "milking it" than you think, trust me. No one wants to be disabled. So please, don't think we are faking it. We are more than likely too proud to admit how much it actually hurts. Pity is not a feeling most people desire.
"Don't demand constant updates about someone's health, even if you’re coming from a place of concern. Diagnosis and treatment often take a long time and constant questions can add stress. If you are close to someone with a chronic illness, don't speak about their symptoms in front of them unless you are invited to. Let them do the talking and decide how much they want to share. Plus, you may not actually know what they’re going through."
Its pretty straight forward, we are tired. We will talk about it when we feel like it.
"Don’t tell that person, “You're going to be OK, I know it!” To some people, that can make it feel like you don’t take their well-founded fears about their future seriously. Better to say: “I’m here for you if you need me. Let me know what I can do.” Similarly, resist the urge to suggest thinking positive thoughts or saying that being optimistic is important for recovery. Can we please have feelings? Remember, people with chronic physical illness are at higher risk for depression. So, it’s especially important not to dismiss their emotional responses."
Remember, less is more. Just listen and be there. We are just as fragile mentally as we are physically sometimes. This lifestyle takes so many spoons.
"Avoid asking someone with a chronic illness whether they plan on having kids. For some, it's an extremely sensitive issue. There are illnesses that make it difficult or even impossible to have children. In that vein, never, ever ask someone with an illness, “What if you were to pass on your disease to your kid?” We can make our own reproductive decisions, thank you very much."
This one is a really big one for me personally. I have spent the last 5 or so years my self, really on the fence about whether or not I want to produce my own children. It has to do with my chronic illnesses and other reasons too. Reasons of which I don't owe you an explanation for. The only people I need to have this conversation with are my doctor, and my partner. That's it. I don't owe anyone else shit. I will write about it, on a different blog post one day if I feel like it. Till then, mind your own business.
"Listen: Exercise is not the blanket solution to all health problems! Stop promoting it as such. And know that many exercise environments aren’t safe or welcoming to people with chronic illness. Teachers and trainers sometimes push their students in ways that lead to injuries or shame them for not being able to keep up with the rest of the class. But exercise is an important means of symptom management for people. If you see someone with a chronic illness exercising, don’t assume they’re all better."
Please allow the doctors and physiotherapists to suggest safe exercises based on that persons individual needs. If you want to help, ask how you can help. Maybe they wish someone could take them to the public pool where they can practice their prescribed aquatic physio exercises with out having to pay for a session with their physio therapist for exercises they have already memorized. (Yeah that shit isn't free by the way) Having company makes us feel less stupid about the funny movements we are making. Or give someone a ride to the gym, maybe walking isn't recommended but the physiotherapist said a bike with low resistance can be good for them. Or if walking is good for them, offer to be a walking buddy. But don't pressure them. Let them and their doctors decide whats best.
"Never shame someone with a chronic illness for taking medications. Being critical of “big pharma” is OK, but there is nothing more annoying than being asked, “Aren't you worried what all these chemicals are doing to you?” about medications that keep you alive. Never, ever suggest to someone with a chronic illness that they should get off their meds and heal themselves with a diet, crystals, or supplements instead. That can be extremely dangerous. Do not poo poo “western medicine.” Do not poo poo “alternative medicine.” Know that different kinds of treatments work for different people and just stay out of it."
This one is probably the most important. I know you all mean well, but please stop. I know you honestly believe you are right, and that you are only trying to help. But stop. You could be wrong, and you could be hurting us.
"Banish the words “Have you tried...?” Yes, yes we have. Just assume that we've tried everything, from conventional drugs to parsley tea."
For real, we have tried everything. I have said this before, but some of these trending health solutions are expensive! Most of them are not covered by extended health and we might not be able to afford them. We also might not be able to acquire these things legally! yet It could also be treating the symptoms, but not the cause. Just let us and our doctors figure this part out okay?
"Ask your friends with chronic illness how you can help them. Cooking meals, giving rides, or accompanying on doctors' appointments, can mean the world to those who need the help. This may be especially true for people living alone."
If you really want to help, this is how. However, please mean it. There are many people who mean well when they say thing like "let me know how I can help" But sometimes they say it, because it makes them feel good to say it. Please make sure you actually can help. Its nice that you want to, but you wanting to help doesn't mean anything if you are not able to. I cant tell you how many people who said they would be there, left my message on read when I did reach out for help. This is devastating and makes me feel like a burden. it makes me feel like its not okay to ask for help. Sometimes I feels like I'm expected to buy help. The thing we need most is a safe space where we can be vulnerable about our short comings with out consequence. I live alone, I also don't have family here to help. If it weren't for the kind hearts of a small few of my friends, I would not have got my diagnosis from my out of town specialist, and I would not have the opportunity for a semi normal life. Also keep in mind how expensive it is to have a chronic pain condition. We might also not want to admit that giving you gas money comes out of our overdraft. So if you offer to help, please mean it and don't do it with any expectations of getting something in return. We may only be capable of gratitude right now until we get back on our feet.
"Don’t assume that people with chronic illness can’t ever hang out! Include them, but if they can’t make your event, offer them alternatives like watching a movie or having a face-time session. [In a group setting] Avoid accidentally disclosing someone's diagnosis. Just because someone confides in you, doesn’t mean that they are out at work [or other peers]. It's always better to double check. When you have to accommodate someone with a chronic illness, do not act like you're being put out—no groaning, moaning, or haggling with someone who is asking for accessibility, please."
There are many other references in the blog about how to help someone in a group setting. We want to be included, and we prefer discretion about our unique needs. We are trying to enjoy our life with out having to think about, or talk about our illness all the time. I have a friend, who also has a chronic pain condition, that differs from mine. They live a much more active life style than I do. They like to go for short hikes to neat and beautiful places in our area. Many times in a row, I declined offers to go out for these walks. Mostly, because the weather was too cold so I was too flared up. I said, "Not today but thank you for trying and please don't stop trying" Now that I am managing my symptoms with medication, I can go on these walks again. My few times in a row of declining didn't make her give up on me. I knew she was there to pick up where we left off when I was ready. Keep this in mind when you have friends with a chronic illness. Even if they have to say no, its nice to know someone is thinking about you.
"Living with a chronic illness is expensive. This can't be understated. Even people who have health insurance have additional financial burdens that can be astronomical. So keep that in mind when inviting people out for expensive dinners or trips."
On the other end, please understand that if you ask someone with a chronic illness to be in your wedding party at your destination wedding in Mexico, that you are asking them to do something that is an actual, literal nightmare for them. Not only can they probably not afford it, but travel is excruciating for some people. Did you know, that in downtown Playa Del Carmen you cant use the seating on the beach, or the bathrooms if you are not a paying customer? I'm sorry, but I'm in Mexico, this is not my usual diet. I need to sit, and I need to shit more often then I have the need or desire to buy something. So please consider your friends and family when planning these kinds of things. Its heart breaking not to be included in them, and very hard to participate. Try to find a compromise before they have to ask for one.
Even here in Canada lots of expenses are not covered by BC Medical and Pharmacare. Lots of them only kick in after you have already spent a fortune, and people with extended health may have to file for reimbursement, having to pay out of pocket first. Some things are only partially covered. Many people, like my self, are just scraping by. Even when I was working full time with benefits I struggled. Now, I only work part time and I don't have extended health. Sometimes its not possible for us to work more hours to make more money, and if we don't have our diagnosis yet, we may be in eligible for disability or medical EI. Lots of folks count on their entrepreneur projects to make ends meet. If you know someone with a chronic condition who sells tupperware, leggings, essential oils, jewelry, art, soap, or anything that might interest you, then keep them in mind before going to the mall or shopping online. Your $20 could be making a huge difference in someones life. This might be their only way they are capable of making a living, and covering their expenses. Many of us are too proud to ask for hand outs, and might refuse them if you offer. But there could be ways for you to help, so look for them. We will be eternally grateful that you did.
So that pretty much covers the topics I wanted to talk about. All 100 of them are incredibly valid, and if you want to read it, and share it, there is a lot of really helpful information there for you and others.
I'm not really sure what Volume 3 and beyond will hold for this topic but I am sure this wont be the last time I talk about it. The key word in "Chronic Illness" is Chronic. I might have set backs that I need to talk about in order to get through them, and I might over come challenges that I want to celebrate. Either way, I appreciate your time. Thank you for listening.
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