United We Stand

Last updated: February 2022

Today we live in a world where a lot of people have an opinion. At times those free-floating thoughts are insensitive, and other times they can be really helpful. One of the largest topics of conversation I have been exposed to is the good and bad when it comes from an already very painful subject, chronic illness.

My primary disease is Ankylosing Spondylitis. I feel the hurt from those comments, not only from a literal perspective but an emotional one as well. Living with it can be an out-of-control rollercoaster with no breaks and many know exactly how that feels.

Done with the comments

Recently I came across an article about things one should not say to people living with chronic illness. Part of it made me laugh until my eyes filled with tears and the other half really did make me feel less alone in feeling highly offended by statements made by people since my diagnosis became my reality.

We are constantly expected to take these ridiculous statements with a grain of salt and move on. I am not sure about everyone else, but I am already exhausted enough from being ill and don’t agree that we should have to endure that as well. Maybe it is time to stop accepting the added pain of the constant irrelevant comments others make and use this as an opportunity to educate people because this is something that seems to be lacking in society today.

There's no one-size-fits-all approach

Social media platforms have become a place of solace for so many since the beginning of the COVID pandemic. I think it is extremely important and needed in such a high-paced world where it is not exactly safe to meet in support group rooms. I have found an amazing couple of online support groups that have been simply incredible as I no longer feel so alone in my journey. I could not be more thankful, but even in these groups, there is room for learning.

I have seen a lot of really good ideas regarding diet and exercise that can be extremely successful when it comes to this disease. However, what works for one person may not work for another, and it is really important to consider others may not have success in the routines that work for us.

It makes a huge difference when we take time to have empathy for one another because each person has a unique situation they are dealing with, but all of us deal with struggle. Simply put, please be kind because there are folks out there that don’t get remissions from the things that are easing your suffering.

We are not lazy

There is enough of a stigma surrounding chronic illness and what society feels is acceptable for us. We are viewed as lazy with nothing better to do than try to live off of the system. I have not run across many people in my online exchanges that have not paid into the same pot that everyone else did, many of us literally falling out in the workplace to try to maintain our independence from the need for financial assistance. The people that have never been able to work due to their health would most likely give anything to have the abilities that healthy people were blessed with to be able to get up and go to work every day.

Standing up to the doubters

We need to stand together and support one another, to bring awareness to a day in our lives. It can start with a conversation with that one friend that constantly tells you, "it will get better," when it really can’t. Tell them their comments, though they mean well, are just a constant reminder that as of right now there is not a cure, so it really won’t get better and how that affects you.

If you see people slamming the "lazy" people living off of their taxes, advise them that we have worked for many years to put into the system just as they have to be able to use those benefits when we need them. If you are unable to work, educate them on how you would give anything to go to work Monday through Friday and not have to worry about how you are going to eat or pay the rent. Some will listen and some won’t, but at least we have tried.

We have to use our voices

I see so many people online that are just beaten down and have given up because society or their medical professionals have failed them. This can no longer be considered acceptable because it is truly not. We all have a voice, and it is our voices that can bring awareness to the people suffering gravely every day with no relief in sight.

Our stories can support the organizations built to educate and draw in funding so that maybe one day there can be a cure. It is very important that we share them! Solidarity is the only answer to ending the ride on a constant hamster wheel leading us nowhere.

Together we can make a difference.

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