M.E. Awareness Day Approaches, What You Can Do.

https://www.psychologytoday.com/blog/turning-straw-gold/201207/what-those-chronic-pain-or-illness-do-want-hear

As I so often find, Toni Bernhard's posts hit the nail on the head.
While I've written before about the things people with M.E. and invisible chronic illnesses find hard to hear, on the other side, there are things you can do and say that are helpful and supportive.

If you read the link, Toni has some great ones.

May 12th is awareness day for M.E., and due to my inability to deal with the stigma and ignorance that surrounds M.E., I am a terrible advocate.  I advocate within my very small community of friends, and on this blog (albeit anonymously).  Otherwise, I can be found lying about, or avoiding revealing my diagnoses to avoid people's (often ignorant, dismissive, and sometimes inappropriate) reactions.

However, living with moderate M.E., I thought I'd share the top 5 things that people can do or say, that I find really helpful and/or supportive.  But let me also say, if you use these, don't do it just because you're afraid to say/or do the wrong thing.  Make sure you are sincere. For me, it's almost as bad to sense insincerity than to hear inappropriate and dismissive comments.

1. Helping….I think helping someone who's chronically ill is difficult.  I love Toni's number 2, it rings so true.  Having to ask for help puts the sick person in a very vulnerable place.  It's really hard to ask for help, and to receive help.  It's a constant reminder of all the things that I can no longer do, or that are especially painful/difficult for me. I hate having to ask for things all the time, especially things that seem small, it is really difficult.  For one, I want to be able to do stuff for myself, if possible.  Obviously.  I crash and make myself sicker all the time overdoing it.

Also, I don't want to be an inconvenience/burden to the people around me. If someone doesn't specifically offer to help, generally I am going to assume they'd rather not….and this is true of most people I know who are ill and at least somewhat disabled.  Like Toni said, the best way to help someone who's chronically ill is to offer something specific.

The more you know about what is especially difficult for the sick person, the easier this will be.  If you want to help someone who's ill and more of an acquaintance, ask a close friend or family member what specifically might be useful. Offering to take their child for an afternoon outing? Offering to run an errand for them? Offering to do something social with them within their limits e.g. visiting them at home?

Personally, I'm always so touched, and so grateful, when someone does something for me that they know is really hard for me.  Or similarly, if they ask, "Hey, I'm going to the store, do you need anything?"  It's still hard to take help, but it's super nice to not always have to ask.  When you offer, you are sharing just a little of the vulnerability with me.  For example, I could say "no thanks" to your offer.

2. Share your life with me.  I still get the occasional pang of jealousy when I see people my age, out in the world living their lives (e.g. someone out running, going to work, or interacting with their kids).  Or people in their 80s who are far more capable than I am (physically).  On the other hand, being so isolated and living such a limited life, I LOVE hearing about what my friends and family are doing. Because I can't do a lot of what I would like, I think it makes me even happier when I hear about the ways my friends are living their lives fully.  Just because I sometimes wish I could do it too, doesn't mean I'm not happy for you that you can.  And even some of the seemingly smaller mundane things sound like adventures to me. Feel free to share your life adventures with me, I can live vicariously.

On the other hand, I also realize that everyone has struggles and hardships.  I think sometimes people avoid sharing these with me, knowing what I face with my health every day.  But I love being a sounding board for friends, too.  It's one small way I can give something back.

While seeing people in hard places can give us perspective on our own situations, I don't see the point in comparing hardships.  When I'm having a really hard day, to be honest, it usually doesn't make it any less hard to know that someone's dying of ALS, unable to breathe, or that babies are starving in some country somewhere.  Just like despite the M.E., I can have empathy for a friend struggling in a relationship, or a family member who has a bout of influenza or strept throat.

3. Don't take offence, please keep asking. I have very very limited opportunities to make friends or even acquaintances.  The friends I've managed to keep are especially important to me.  Sometimes, when I'm feeling super weak and fluey, or dizzy,  I'm not up for talking on the phone.  If I'm doing an outing, sometimes I feel Okay, but that can go down-hill in minutes.  As well, after an event (sometimes even a phone call) I often crash, meaning I have flu-like symptoms and increased weakness.  It feels a lot like the first day of a bad cold virus or influenza (symptoms milder, weakness and ickiness worse).

My point is, if you invite me to do something with you, or if you call and don't reach me, or if I cut a call or outing short, it has NOTHING to do with you.  I absolutely love your company, and I'm touched you made the effort.  I'm just ill, and I can't control how I feel (unfortunately).

What you can do is keep trying.  Call again, invite me again.  And on my end, I'll keep making attempts too.  One of the hard things living here is I so rarely get any kind of invitation to do anything.  Even people who used to invite me, or made attempts in the past, have stopped….I'm guessing because 9 times out of 10 my answer is no.  I love it when my roommate "invites me" to watch a movie, or share a meal.  It's about the only interest there is in my company, at least where I live.  Don't give up if you have sick friends.  Even if we can't visit, attend, come, the gesture means a lot.

4. What to say. I guess if you're close to me, just be honest.  And we don't have to talk about me being sick.  It consumes so much of my life, it doesn't need to consume my conversations as well.  But as a rule of thumb, ask, don't tell.  Rather than telling me what I look like or how it looks like I'm doing…. "You're doing great, look at all you accomplish!", or "You look great! not sick at all.", try, "How are you feeling?" "Is this a crash day?" "How are you coping?"  "Are you dizzy? Do you need to get your feet up?"

Also, one of the things I hate, is when I tell my parents on the phone that I've been really ill or relapsed and they say "cheer up", or recently, "maybe the nice weather will help." If someone told you their cancer or MS had relapsed would you say "cheer up!" or "get some sun."?  Generally "cheer up" would be a response for "I've been feeling sad." although even for sad, not the one I'd go to.  On the other hand, a healthy friend told me recently "I hate M.E!" For some reason I was so touched. Maybe the acknowledgement in that statement that M.E. had impacted her life too (also, just the acknowledgement that M.E. sucks).

5. Show an interest.  I'm always so grateful when friends or family members do research about M.E. or POTS.  It takes the burden off me of always having to explain everything.  For example, when the "Canary in a Coal Mine" fundraiser was going on, I had friends who donated and shared info about it online.  I felt so supported and cared about. Really, I've got some pretty good friends.

Obviously, if you're alive on this earth you will have friends and family members with a host of conditions.  It's not all about me all of the time, I get that.  There are so many worthy causes and issues (environmental, social, health etc.).  However, when someone cares enough about what I'm going through to look it up, or get involved in some small way, I'm always super touched.  For example, even though I gave them to her, it meant the world to me when my mom cared enough to read a summary about POTS and Laura Hillenbrand's "A Sudden Illness" story.


If you have M.E. what do you find most helpful and supportive?

Do any of these ring true?

Will you do anything to advocate for the cause on May 12th?