The don'ts--
First, please please please don't tell those with chronic illness "you look fine." The majority of those who say it probably mean it as a compliment, however, to anyone with a chronic illness especially an invisible one, hearing "your look fine" reminds them of all those times that family, friends, and doctors doubted us. It makes them feel like you don't believe or care, even if you do. So please, feel free to say how pretty that person is, haha, or ask if they are having a good health day, but just don't use the words 'but you look fine'. And more importantly, don't assume if they do look fine that they feel fine. Most of the time the two don't correlate.
Next, don't abandon someone with chronic illness. This person has already experienced so much loss of their old self. They may have gone from completely able-bodied to disabled. They may not be able to do nearly as much or the same activities, but you can still show you care by not running away.
Lastly, please don't throw random quick fixes at someone who is chronically ill. It makes them feel like you don't take them or their illness seriously. For example comments like "just take vitamins" "find a hobby" and "oh I feel tired all the time too"- Those don't help. Many with chronic illness do take vitamins, and if that was a cure no one would suffer from this disease. Many with chronic illness do have hobbies and try to do them as much as their body allows, even if they aren't your choice of hobbies. And unless you have a chronic illness, your tired probably is not nearly on the same level as their tired. Often those with chronic illness aren't looking for you to fix it, unless you are a doctor. They are just looking for your support and love.
The do's--
Rides/appointments. Those with chronic illness often have lots of appointments. In addition they still need groceries, maybe go to church and want to get out when they can. However, many with chronic illness cannot drive. Those who can still may not very often. They only have so much strength/energy for each day. Driving means they will have to give up something else. Even if they can drive, if there is not a parking spot close enough, they won't be able to do whatever they were planning on doing knowing they won't have enough energy to make it. Volunteering to drive would be a very nice gift to someone with chronic illness.
Support Groups. Join your friend or family member at one! They would be overjoyed to hear that you want to. Or even attend one yourself to learn more. It is a great way to learn about the disease, new treatments out there, and how you can help. There are usually brochures to pick up and sometimes speakers come in. It may seem weird to you, but take that step outside your comfort zone and join your loved one with chronic illness.
-San Antonio MG support group: http://mgsouthtexas.org/
-Chicago area MG support group: http://www.myastheniagravis.org/
Walks/Fundraisers/Meetings etc. There are things out there if you search just a bit. These things may not directly help your specific friend or family member, but they help the cause, help with awareness, and help fund the research needed to find new treatments and hopefully one day a cure. When your friend or family member posts to facebook or emails you asking for donation for the walk they are doing, forgo one drink to make a donation. It is much appreciated.
Housework/cooking/meals. If you want to pick just one thing to help someone with chronic illness, this is probably it. This often gets overlooked but it is something everyone needs to do including those with chronic illness. But it's not easy and the more of this they do the less of anything else they can do. Repetition wears the muscles down in MG. Standing poses the risk of passing out in POTS. In most all chronic illnesses, fatigue is extreme and pain sets in quickly. In regards to cooking/bringing food, just ask their dietary restrictions first. Many with chronic illness avoid sugar, gluten, dairy and processed foods because it triggers their illness/symptoms. Organic/non-gmo/meats/veggies are often the way to go for many. And I'll bet you, they won't turn down a delicious meal!
If nothing else, prayers, messages, cards, anything to show others do care goes a long way. Getting mail can be fun to those with chronic illness because most of the time that mail is filled with medical bills,
Lastly, thank you specifically for reading my blog and for passing it on to others. We with chronic illness NEED awareness. MG is rare, POTS is fairly common yet unheard of by so many and Lyme is a ridiculous controversy with false information circulating. We need awareness so we no longer have to be told it's "just anxiety" as our lives are at risk, and most importantly we need awareness to get funding in efforts to find a CURE! Thank you all!
MG Items for Sale
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Dysautonomia/POTS Items for Sale
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