Don’t Be That Person
I am sick, let’s just make that point clear right now! I need people in my corner, willing to fight this battle with me. I need emotional support, physical support and reliable support. I know that on the outside I look fine, and if you don’t see me every day, but you see my happy smiling face on social media, I must be doing great. I know that’s how people think. You don’t understand my disease, how to pronounce it, spell it or what it really even does to me. Don’t be that person, just don’t! Family and friends alike. Strangers, I don’t expect more from, but my loved ones, I do! Don’t get me wrong, I have some truly amazing people as a support system in my personal circle. Not everyone is oblivious.
So many turn a blind eye though. Is it because they just haven’t seen my pleas for them to step up, just by hitting one button, possibly, but in many cases, no! Is it that they just think I’m seeking attention and that nothing is really wrong with me? Change didn’t happen because one person spoke up. It happened because that person never gave up in the face of rejection. They pushed harder and harder until people listened. That’s what I have to do, but for those close to me, those pleas shouldn’t fall on deaf ears and blind eyes. These people should be the first people to have my back. Sadly, many choose to be, “that person”! I’m asking you not to be!
I Didn’t Do This To Myself
Some people act as if I caused this. Treat me as if I don’t need or deserve support or acknowledgement because it’s my fault. At least that’s how it feels when you are talking to someone and they blow you off. Or say something like you must not be to sick if you can still do this or that. Or when they say, it could be worse, you could have cancer. Excuse me, but when did you spend a day in my shoes? Just tell me how you know what I feel and how bad it is? People, let’s be real, cancer is horrible, it can be tragic and terminal. Don’t think for one second what I’m experiencing can’t be as well. I didn’t choose this, so for people to tell me it could be worse, or I must not be too bad, it just makes me feel like they think I’m choosing to act like this is a bad thing. Trust me it’s not an act!
People with AS have AS because something genetic in their body isn’t working properly. These people didn’t choose this. It’s not like there is a DNA line to stand in and pick witch genes will make you up and which won’t. We just got the unfortunate marker pattern to be jacked the f*ck up! How lucky are we? ( Eye Roll) seriously, we would get rid of it if we could. So please don’t make me feel like I don’t deserve the acknowledgement and support. I need people to understand, to be supportive because I didn’t make crap choices in life to end up like this. I’m not begging for sympathy and attention because I created my own disaster, this disaster chose me, and I need to not feel like I’m alone!
Reliability, Support and Awareness
For me and many others like me, we don’t have a very big personal support system. It is usually a handful of people and I mean maybe 5, that actually know us, and the rest is a bunch of strangers that get it because they have AS too. Some people don’t even have a handful, they have 1 or none! That’s why it’s important that you step up and join this cause. I’m worth it, they are worth it. We are all worth it. #ASLivesMatter. Seriously though, some of these people have nobody to turn too. That’s why you need to do your part. All you have to do is share a post. Simple right? I mean you already share the Cancer,, Alzheimer’s, Diabetes, and other such post. You do, I see them! So what’s one more, for a disease that affects your loved one?
Each time I see someone share about other diseases, It’s like a slap in the face, and someone yelling at you that AS isn’t real. It hurts, it sucks. Why? Because they can’t be bothered to share my post, and nobody knows what the hell AS is, because nobody wants to get actively involved in raising awareness for something they never heard of before. I need people I can rely on, that will be a force to drive our cause. People that I know I can call on the really bad days and I know they will be there. Not telling me they can’t come, they are to busy. I need to be there for someone else, they are having a hard time. I AM HAVING A HARD TIME!!! When do I get to lean on your shoulder? When do I become important enough? The moment my disease puts me in the hospital, takes my life? Tell me, when will it be?
Comorbidities And Other Complications
AS its self isn’t typically terminal. However, the fact is that AS has several known Comorbidities. The presence of other chronic diseases. This is in often case more than 1 additional diagnosis. Some of these can actually be terminal. Then the complications of AS can be terminal. For example, AS cause damage from inflammation, that damage can then cause hardening of tissue including heart muscle and lung tissue. In those cases cardiac arrest and respiratory failure can occur and are more likely to occur in AS patients. My heart and lungs are not doing their job properly and that puts me at an increased risk for death related to these events. Depending on the exact findings how much that risk increases. People are more likely to become fully disabled and the results of full disability can lead to many damaging issues that could result in death. It puts you at an overall greater risk, especially if you do not receive adequate care.
Spinal fusion and fusion of other joints in the body is a very common result of AS. When the fusion occurs, it puts you at a great risk of fracture and breaks. Having a spinal fracture could result in immediate death, if it occurred in the wrong place. You are more prone to falls, and disability at this point, both of which again increase your risk of death. The medication used to treat people with AS, well the simplest of these are NSAIDs and those are damaging to the liver long term. So guess what, you have to deal with tha even on the simplest medication. As you move into more aggressive forms of treatment, you have biologics which kill your immune system. This puts you at great risk of infections. You can’t even fight of the common cold. This means you have to be careful or something fairly minor could result in a deadly situation. They even sometimes use Cancer drugs for treatment of AS, so then you would have all the fun of that. Most of the treatment options available come with serious side effects. Including increased risk of Cancer or other Diseases. Yes, many of the options available can cause the onset of a new disease.
I’m Worth It, Our Cause Is Worth It
It doesn’t take much. You can show your love and support in many ways. Just by simply hitting share, you can do so much. You can offer to cook a meal, clean the house, do the shopping. These are things that cost me greatly in my available energy reserve. Just going to the store wipes me out for the rest of the day. What I’m doing to be an advocate is a full time unpaid job in itself. Then I work a full time job, so I can provide for my family. I have nothing left in me. So if I am advocating, trust me, I’m paying for it. If I’m socializing and trying to actively participate in life, I’m paying for it. Not with cash resources, but in the Spoons, the energy I already don’t have.
Offer to write a letter, not just to me, but to someone like me. Send a care package. Offer to donate for the care packages I will be sending out. Share my story. Let me see you actively showing you care. Wear blue, use blue, hashtag Kick Some AS, or Together We Can Kick Some AS, it Giving Spoons To Kick Some AS. Post a cover photo, a profile pic in Awareness. Start a fundraiser for AS on your Facebook page. You can donate to the Spondylitis Association of America via the Facebook fundraiser option. It’s getting there, but you can help us go a long way if you just don’t be “that person”. You can show us we are worth it, our cause is worth it. Join me on all my social media accounts Kick Some AS. Follow my blog. Show me the love.
Click on my link on the page for Ko-Fi to support the cause and give some spoons!