I’ve had a hard week, so rough in fact, it made me pull hair. It's been a week of pain from a shoulder injury, grieving of my surrogate grandfathers, shock at my late surrogate grandparents' house being sold so quickly, and a great deal of family drama. It's lead me to some sleepless nights, isolation, feelings of guilt and frustration, not to mention the inability to pace myself. It's hard being an adult, harder still when your body refuses to keep up with what you want it too. It's hard to accept that you need to adjust your expectations of yourself, especially if you and those around you have always held you up to impossibly high standards. But this week was full of tears and many medical tests, and now that a new week is starting, I'm hopeful that I will continue to heal instead of hurt. Recovery is not a straight line up, it's a mountainside (or a graph like above). Sometimes things go down before they go up, and it's unfair and I may not believe that everything happens for a reason, I do believe that it doesn't rain forever. I appreciate those in my life who have helped me through the last few years in struggling with my disability and mental illnesses, and I can't ever thank them enough. It's been great to have friends and family be willing to help me and are supportive. That being said, the past two weeks have made me think about the do’s and don'ts of supporting a disabled/mentally ill/ chronically ill friend/loved one. For the purpose of this list, I'm going to use “friend” as an example and use my own real world experience
Let's start of with the do’s
Do ask your friend what they would need from you on a regular basis and how you can fulfill that. For me, I need to have at least three texts a week from my innermost circle of friends
Do some research. If your friend has Chrons Disease, you can find information on the disease, symptoms and treatment options as well as support and services your friend might not be aware about on Chron’s And Colitis Canada’s website
Do look towards blogs and YouTube channels of those who suffer from their illness to find out potential coping mechanisms. For me, when I'm on the verge of a panic attack, I need to be held very tightly and rocked slowly from side to side. For someone else, touch can make a panic attack worse. Come up with a list of potential coping tools from your research that your friend might find helpful
Do have a discussion about what your friend would need from you in the case of an emergency, and indicate different tiers of emergency. Below is a chart with my own five tiers of emergency, although this is simply my own creation. It's important to know that each person's chart will look differently.
Do invite them to social events. If your friend is wheelchair bound but you both want to go out to a painting class, call ahead to see if they are wheelchair accessible. Many cities now have online forums showing what businesses and public places are wheelchair accessible.
Do stay in touch with them. Nothing hurts more than being ghosted, I know, I'm guilty of that.
Do talk about what terms may offend your friend and what words are more politically correct. For example, the word “midget” is no longer socially acceptable and your friend may prefer “little person” or “LP”. It's better to know what terms (that may seem harmless to you) are offensive to your friend and the community they belong to
Do set boundaries and stick to them. If you are on vacation and your friend is a fatigued that they want to go back to the hotel and lie down even if the tour isn't over yet, if you have set the boundary that you will go back to the hotel with them and finish the rest of the tour at a later time, fulfill that
Do give them space of they need it. Some chronically ill and disabled persons need to recuperate between socializing and being physical. It can take a few hours for some, up to a week for others or more before they have enough energy to hang out again.
Now for the don'ts
Don't compare who they used to be to who they are now. If they lost a leg and are not an amputee, don't point it out if they are sensitive about the issues
Don't treat them like they are broken or an inspirational poster. Two examples: me, a person who was a led bodied for over 17 years of their life, and then chronically ill for three years and disabled for another three and half and my sister, a Down's Syndrome young adult who has had said disability her whole life. In the case of “broken”, asking me “when are you going to be all better?”, or “you used to be really good at that, why haven't you tried harder now?” makes me feel broken and as if I'm not good enough, when in reality, I have different limitations now as I did before. In my sister’s case, she's seems as an inspirational poster for any person who meets her. For examples he statements “she can do that? What's your excuse?” or “the only disability is a bad attitude” are compliments but glorified motivational posters for able-bodied folks who need reminding that it “could be a lot worse”. It is very insulting when an able bodied person sees a disabled person as nothing more than something to fix, pity, or keep in a box checkmarked “disabled and nothing more”
Don't give advice if it isn't asked - I still do this, but I'm a fixer kind of a person, so I'm still learning. However, unless a friend goes to you and says “I've tried everything and nothing's working!” asking them if you can help come up with new ideas of helpful. Simply asking if they've tried dieting and exercising and trying a weird new drug that hasn't been approved on their recently updated profile picture on Favebook is a biiiiiiig no-no.
Don't cross boundaries. If your friend says to drop something,drop it. Unless it will lead to them harming themselves or risk of harm, then don't intervene. I recently tried to cross a boundary and give some “tough love” and it did not go well. We actually almost lost our entire friendship over it
Don't skirt around issues of emotions. If your friend hasn't texted in a week, don't ignore it. Ask them how they are. If your friend is acting more aggressive or defensive than normal, don't ignore it, talk with them openly about it.