An Open Letter To Those Who Live With Spondys
To those who are blessed enough to live with someone living with spondylitis, I, for one, know it is not always easy.
We sometimes seem that we are unhelpful, grouchy, selfish, and all in all just not always on board with everything going on in your life.
I’m writing this letter to all of you on behalf of the spondylitis patient community. These are the things we want you to understand and how you can better care for us both mentally and physically.
1. Enjoy the little efforts
Sometimes, ok...oftentimes, there is a lot that needs to get done in the house. The laundry needs folding, the dishes need washing, the floor needs sweeping, and the tub needs scrubbing.
Living in a clean environment is one of the most peaceful things in the world, believe me, I know.
However, sometimes when we reach down into our energy banks, all we have the effort for is to sweep the bedroom or fold a few towels. Just doing these tasks can be enough to sap our energy and/or trigger a flare.
So, when you come home and find that your Spondy significant other has cleaned out the sink...Please celebrate! Thank them for what they have done. Please don’t ask them why they didn’t also clean out the fridge and scrub the counter.
Believe me when I tell you, cleaning out that sink wasn’t easy, and we wanted you to see we can still help out. If we had the energy to do more, we would have.
Doing one small task isn’t the bare minimum for us. It very well could be the extent of our abilities right now.
So, please enjoy the little efforts. For us, it means a lot.
2. Excuse our grumpiness
Believe me again, I know, we aren’t always a delight to be around. I have to live in this body, I have a front-row seat to my mood and word choices.
When we seem annoyed or totally upset at the world, I can say, it's not you, it's us.
You probably didn’t do anything wrong, and we aren’t actually angry, we are in a lot of pain, we didn’t sleep well, and we are upset that we couldn’t do what we had hoped to do.
Pain is a powerful force and it takes over every part of our brain. We can’t focus on anything and it just makes us feel bad.
So, when you come home and tell us about your day, we aren’t ignoring you and we aren’t blowing you off, we are trying to fight the pain enough to give you our attention.
So, on these days when pain eclipses our positive mood, please don’t be upset and think we are mad at you. We are in pain and we are literally fighting to give you a smile.
3. We want to go out
The pain and exhaustion caused by spondylitis can turn a fun event into absolute hell.
Going to a concert could be the most fun event ever! However, driving there, walking to our seats, standing during the show, the pounding bass, and being pushed in with other people are a literal nightmare for most of us.
When we have events coming up, we tend to think long and hard about whether or not it will be worth it.
This also applies to smaller events like meeting friends for dinner. As mentioned above, pain can make us really grumpy, and not very fun to be around. Keeping a positive face uses more energy than we might have. We debate whether or not being in pain and coming across as a jerk is worth a nice night out.
Most of us are not chronically antisocial. We are chronically in pain. Without the pain, we would do anything and everything!
Some nights, we are absolutely miserable already, and a hot bath and a soft bed far exceeds being crammed into an Applebee’s booth.
4. Let us use our energy on ourselves
We, the Spondys of the world, are given very limited amounts of energy and days in which we feel like being productive.
All that we ask is sometimes on those days, let us use our energy on ourselves.
The little things that we enjoy that give us a reason to get out of bed in the morning, but might not necessarily better the world around us.
I’m talking about planting the vegetable garden we’ve always wanted, painting a picture, or doing a little bit of work on the Man Cave/She Shed.
Yes, I know you would prefer we use this energy on cleaning out the litter box or flipping the mattress, But sometimes we need to be a little “selfish.”
Chronic pain leads to chronic depression. It is not easy living like we do. I know, you cant see our pain, but it can literally kill us inside. If we aren’t allowed to use our “spoons” on little things that make us happy, we can fall deeper and deeper into depression and stop feeling like ourselves. Just a bundle of skin and arthritic bones who can’t accomplish anything.
And please, I beg of you, don’t ever shame us for using our energy on ourselves. It doesn’t mean we don’t care about you and your needs. It just means we need a little bit of self-care.
5. When we need a break, we NEED a break!
This is not a topic for a full section, but a little knowledge I need to pass on.
When we are doing something and we say we need a break, we mean NOW!
It doesn’t mean in 10 minutes. It means, “If I don’t sit down right now, I’m going to fall down!”
We Spondys are very in tune with our bodies and our abilities. When we feel our batteries are running out or our bones are about to give, we need to sit down.
One of the worst things we can do is work through the pain. When we do, the lasting damage will be worse and the effects will last longer.
Letting us take five every ten will hopefully allow us to work longer, and recover quicker.
We want to be there for you
Believe me, we hate that our bodies make us like this. There is nothing more we want than to be the most involved and happy person in your life.
We know that living with us is not always sunshine and rainbows. Oftentimes it can feel gloomy most days.
We want to be there for you helping out and going out with friends. We don’t like that our bodies make us need to slow down and miss out either.
So please, on behalf of all the Spondys of the world, be understanding and forgiving.
Do you use the word disability to describe your AS?