Nickie’s Nook: Oils and Books

Earlier, I did my best to describe Complex Regional Pain Syndrome. If you have a friend with CRPS or another form of chronic pain, I’m sure you want to support them, but you may be wondering how you can best do that. While I may not know that person’s situation, these are some suggestions based on my own experience.

Believe Them!

I can’t emphasize how important this point is! Most of us have had at least one medical professional express disbelief or outright call us crazy or drug-seeking. And we’ve all had someone say “But You Don’t Look Sick” or “That doesn’t look too bad”. Those remarks often hurt us more than the chronic pain. Imagine if you had a condition like diabetes, you told your friend about it and they didn’t believe you or said “your blood sugar values don’t sound bad”. You’d be hurt, angry or both, right? For some reason, conditions like CRPS, migraines or fibromyalgia are more acceptable to doubt in our culture.

Your belief in your friend’s pain and other symptoms is one of the best gifts you can give them. It can be something that validates your friendship. Your belief that they’re telling the truth is a gift when others are doubting us. In my case, when I was relatively newly diagnosed in college, the friends who believed me when I said something painless to them was agonizing to me gave me the gift of feeling like my word was still valid. Knowing I didn’t have to defend myself was like finding a safe place in a field of minefields. For example, one year, I had a roommate who wouldn’t believe that I needed a room to be at least 68 degrees because cold is incredibly painful. Others couldn’t believe that having my foot hang down while sitting for more than a few hours is painful. My friends who believed me without question made my college experience so much more positive. Knowing they had my back was empowering.

Ask What We Need

Don’t assume you can’t help because you’re not a doctor. A lot of times there are seemingly simple things you can do that can make a huge difference in our day. A lot of these are different from person to person, so that’s why asking is so important!

Avoid Over-Suggesting of Treatments

There are times when you can honestly offer helpful suggestions of treatments, but those times aren’t when you don’t know much about the person’s situation. It’s natural to want to offer suggestions of things you think will help, but we get so many which don’t apply to our situation and many of those are potentially dangerous for our situation. Also, many don’t apply to our conditions. When someone doesn’t know much about my condition and suggests a seemingly random treatment, it can be frustrating. Especially if it’s a suggestion which implies that CRPS isn’t real. I always do my best to remember that the person doing the suggestion means well and wants to help. But when the suggestion feels invalidating, that can be challenging.

Check in Regularly

I’m speaking from experience when I say this. I often don’t reach out when I really need to. Sometimes that’s because of depression I’ve developed due to the pain. Other times it’s because I hesitate to interrupt my friends who I assume are busier than I am. My thoughts are often along the line of “they’ve got more important things to do (taking care of kids, working and doing the life activities I can’t). I don’t want to bug them.” While you’re not the only one responsible for maintaining the relationship, your act of reaching out tells us that you still want to stay connected. Dealing with severe pain and other health issues can take over our lives. It’s a full time job, but when friends reach out, we’re reminded that there is more to us than our health problems. And while we know that intellectually, it’s often hard to remember and feel that emotionally.

Offer A Helping Hand

If you’re going to the grocery store, check whether your friend needs anything. If you notice that their place is a bit messier than usual, ask if you can help them pick up. If you’re able, offer to do the dishes the next time you go over for dinner. The things that are little to you can often be overwhelmingly painful to us.

Smaller Doesn’t Mean Less Fun!

Sometimes going out is just too intense of an activity for us. the acts of getting ready are painful and contribute to fatigue. Going out to eat and then to a movie might be more than your friend can handle. Now that we have Dor Dash, Uber Eats and on-demand video sites, it’s possible to eat restaurant-quality food and watch a movie in the comfort of your own living room or theirs. Let’s be honest, your time with your friend is what you remember from most activities, right? This doesn’t mean you’ll never go to concerts, movies or shopping malls with your friend, it just means that some days it’s better to have the time together at home than cancel the activity altogether.

Create a safe spot!

Your friend might need a quiet place with a bed, couch or recliner to retreat to during a holiday party or even a girl’s night in. With CRPS, we often find that various stimmuli are painful even though you wouldn’t expect them to be. Between my CRPS and migraines, I find that touch, light, noise and cold are painful. When I go out to a restaurant, the level of noise there is more like that of a rock concert in terms of discomfort. I often skip certain gatherings because they can be too loud. If I knew there would be a quiet room in which I could rest and put up my feet, I would be more likely to go. The long gatherings are often more than we can handle. And it feels like more trouble than it’s worth to go for just an hour. Plus, when you consider that we have to worry about getting home when we’ve gotten too tired, it’s often easier not to go.

That doesn’t mean we don’t desparately want to go. I’ve found that what’s happened over the years is that I feel awkward asking for a room to be set aside for me, so I either try to go and don’t succeed in going or staying or I worry about how well I’ll tolerate going so I don’t even try. Also, add in the fact that it’s even more difficult as a person who can’t drive and you have a recipe for isolation.

Last Thoughts

Remember that your friend still values your friendship. They’re dealing with a full-time job of managing their pain along with trying to do as much as possible for themselves. If they don’t reach out, remember the last time you were overwhelmed at work and cut them some slack. Ask what you can do to help. SHARE how you’re feeling with your friend, know that they still care about you. Believe what your friend says about their pain and make sure your friend knows that’s how you feel. Ultimately, your support means the world to us!