Most people with loved ones who battle a chronic illness are unsure of how to be helpful. It’s no surprise since it’s hard to know what someone might need or want who isn’t you and who is going through things you’ve never experienced. Each person’s needs and desires are unique to that person, so I can’t speak for everyone with EDS, Chiari, Syringeomyelia, or any of the other health issues I’m facing. I can, however, share some things that I would very much appreciate to get from others.

  1. Time. Spend time with me. I often feel very lonely, ignored, abandoned, and unwanted by others, and it’s because I don’t get to interact with people much. I’m addicted to Facebook and blogs (when reading isn’t too hard) because it’s basically the only social interaction I get. I hate talking on the phone, texting is so cold and rife with opportunities for misunderstanding, and not many people really pay much attention to me on facebook (which leaves me feeling more alone and ignored). Invite me over to your house so we can just sit and chat or watch a movie or do something crafty. Invite yourself over to my house so we can do the same here. Invite me out to do something, and talk with me to make sure it’s easy enough for me to do. Even if my body forces me to cancel last minute, we can reschedule for another time, and I’d at least know that you care and want my company.
  2. Help with chores. This is actually the most helpful thing you could do for me. All of my energy goes into housework. It takes so much out of me that I cannot keep up, which makes me more depressed, and it keeps me from having energy to do things I actually want to do. It even takes over the physical therapy I should be doing because anything physical is severely depleting for me. Dishes, laundry, sweeping, mopping, dusting, scrubbing, litterbox, … Anything that requires bending, leaning, reaching, or, really, just being upright and moving is difficult and painful for me. I’ve not painted or crafted anything in months because any time I actually have energy, I spend it on housework. And the house is still perpetually dirty! Hubby does his best to keep up with things, but he’s also the only one able to work and has to take care of me on top of everything. Coming over to help with cleaning not only takes some struggle off my plate, but it lightens his load as well.
  3. Doggy dates. Any time Hubby is gone, not only am I alone in whatever struggles each day brings, I have a dog to deal with that I can’t do much for. I can feed and water him, and I can usually let him out to go potty without too much hassle, but it’s still a challenge just physically moving to do those things because, beyond the pain and energy output, it puts me at risk for my spine slipping out (or knee or hip). I can’t play with him. I can’t walk him. I can’t let him lay on me like Hubby does because he’s too heavy, and I generally can’t stand to be near him anyway because I have a very strong aversion to dog smell. It seriously makes me gag like rotten food. I definitely can’t bathe him to get rid of some of the stink either. He also whines NON-STOP the whole time Hubby isn’t home, which just compounds the stress for me. If you know Hubby will be gone, offer to take Kasey off my hands – overnight, all week, or even just a few hours will help. Even if you don’t want to take him anywhere, you could come here and just sit and snuggle with him so he gets some of the love that I just can’t give him.
  4. Read, like, and/or share the stuff I post online. I don’t share stuff online about my illnesses for attention or pity. It’s about awareness so that others don’t suffer as much as I have at the hands of ignorant doctors (and hateful, judgmental people). Almost all the medical issues I face are severely under-diagnosed because of a lack of awareness and education among medical professionals. MOST PEOPLE with EDS, Chiari Malformation, Syringeomyelia, and a few others have had to be their own advocates, researching their own conditions and taking that research to their doctors to get the diagnoses and treatment that’s actually appropriate for them. We get dismissed by so many uninformed or misinformed people – friends, family, and medical professionals – that suicidal depression is everywhere in our support groups. I think almost once a week I hear about someone having given up in one of my support groups, and it always triggers a wave of hopelessness and desperation among members. By interacting with my posts, not only are you showing me support, you’re increasing the chances that someone who needs the info will see it and be able to use it. Even if you don’t actually read something, just hitting the like button will trigger the algorithms that prompt more visibility online. Further, if you print something and share it with anyone you know who works in the medical field, you’re increasing the chances of better treatment for others.
  5. Donate to charities. Charities are the powerhouses behind better education, awareness, research, treatment options, and improved quality of life for all kinds of medical issues. My birthday is May 28th, and this year, I decided to “donate” my birthday to Ehlers-Danlos National Foundation to raise money for EDS. I set a goal of $248, which I feel is low, but it’s my first time doing this, and I wanted an attainable goal. There are tons of charities you could donate to, and knowing that you’ve felt inspired to donate to anything having to do with one of my illnesses helps me feel loved, supported, accepted, and valued in your life, even if we aren’t able to hang out in person or talk on the phone. It tells me you care about what I’m going through and want to be helpful. Even if it’s just five bucks, I’ll still feel less alone and unwanted, and knowing that there’s more help available for others facing the same troubles as me is always comforting. Solidarity means strength, and that’s what you give when you donate. Here are just a few charities to choose from:
    1. The Ehlers Danlos Society
    2. Ehlers Danlos National Foundation
    3. Ehlers Danlos Support UK (International, not just UK)
    4. Conquer Chiari
    5. Chiari and Syringeomyelia Foundation
  6. Invite Hubby out. He gets overloaded dealing with work, taking care of me, and trying to keep up on housework when I can’t help. He needs time to get away from his obligations and relax for a bit. He’s not one for crowds or strangers, but he likes hiking, pool, darts, Cards Against Humanity (both of us like that one πŸ˜‰ ), and beer. Help him blow off some steam. It will benefit both of us, and you get to have some fun, too. Caretakers of the chronically ill often feel overwhelmed and helpless because they have to watch their loved one suffer and are unable to relieve any of their suffering. He works hard to support us financially and to help me with everything I fight against medically. He definitely deserves time to do his own thing with friends and not have to be taking care of anyone but himself.
  7. Gift cards. All my mobility aids, braces, compression garments, etc. are expensive and mostly not covered by insurance. Most can be bought online, so gift cards for Amazon, Etsy, other sites, or even those Visa gift cards are always helpful.