I don’t recognize the girl I was three years ago, April 8th, 2015. I knew what permanent was because I had a child, these stretch marks aren’t going anywhere and neither are my many tattoos – but I never really thought about anything that would be sticking with me for the rest of my life that would actually drastically change my entire world for better and for far worse. One of the hardest lessons I have learned in life is what chronic really means. It means forever. Until I die, I will have to live with this. This shit ain’t going away anytime soon, nor ever. Unless a cure is found.
Disease has the ability to change someone’s life in a way that you don’t really understand until you succumb to it yourself.
Who I was before that day died, she’s gone. I am discovering who I am now, today at 32, a mother to a 5-year-old, and I am disabled. I am still the same person, my name hasn’t changed. I am still Jacob’s Mom. I still live in the same apartment. My favorite band is still Judas Priest, I still have the same tattoos and more, I still love a lot of the same things – but I am different now.
I am one hell of a lot stronger. What doesn’t kill us can make us stronger in some ways. I may be physically weaker, but the wealth of knowledge and experience that comes with illness can’t be fully explained in an article.
Our experiences shape us and change us. Autoimmune arthritis attacks us from the inside, many cases are invisible. I’ve learn how vulnerable it makes me, to poverty, disease, infection and people who take advantage of your weakness. Be kind. You never know what someone is going through.
At first my diagnosis of rheumatoid arthritis felt like a near death sentence. At first I didn’t know how to control my emotions, pain or unbearable chronic fatigue. I felt like I was trapped in a shell of someone who I once was. It taught me seeking help wasn’t a bad thing, it was one of the best choices I ever could make. It taught me the suffering I felt inside wasn’t my own fault and I definitely am not alone.
Being diagnosed with arthritis in my last year of my 20s made me not only feel like I was kissing goodbye my 20s, but also my youth. I thought only old people get arthritis. It was, and sometimes still is a hard concept for me to not feel a lot older than my 32 years on this planet. Maybe more like 87.
Just over three years ago I was able to get up every morning, shower, do my hair, make up, pack a lunch and head off to work for an eight hour shift in a busy spa, come home, prepare dinner and take care of my son without much thought about how I was going to be able to do all of this. I went out with friends and I could drink alcohol. I could do so many things without thinking twice about pain nor fatigue.
Then everything changed. I changed. I now struggle to do basic needs any mother would do on a daily basis, without having to worry about the busy hustle of work that I now miss, just because I could. It’s like I had to learn to live life all over again, disabled and as a new person.
Yet, looking at me you would think losing weight after birth of my son and managing severe manic depression that makes me overeat, I look healthier. You can’t see my triple whammy of chronic illness festering inside me, rheumatoid arthritis, osteoarthritis and fibromyalgia – which comes with a heavy dose of anxiety and depression. Weight loss is a symptom with many chronic illnesses, as is weight gain. Looks can be deceiving. I learned how to control my eating, eat even healthier, what exercise I like and to accept myself. No one needs to be perfect, just authentic. Enough with the fake people.
There is no cure for arthritis. There is no one perfect drug. I’ve gone through 18 in the last three years. Side effects suck. They can be as bad as the disease! They can even affect your mental health and may cause suicidal thoughts and actions.
I learned what an invisible illness is, about so many chronic and disabling diseases, and the affect it has on someone. I’ve learned what it is like to never be healthy again, face limitations in almost everything I have to do every day. I’ve learned what it’s like to have people stare at you as you get out of a vehicle in a handicap parking spot, or why you must take a busy elevator. I look perfectly fine and young. I’ve learned what it’s like to have people not believe you are sick just because of the way you look, because you’re have an OK day, or they can’t see exactly how hard you are pushing yourself to be out in public acting normal, rather than showing you what our illness does. That “chronic bitch face” is a chronic pain face.
I learned arthritis does not discriminate and it takes lives in pieces. There are over 100 types, arthritis is a blanket term for many joint pain diseases and conditions. It can affect anyone, any sex, age, or race. There are degenerative wear and tear, over time form osteoarthritis and autoimmune form rheumatoid arthritis. Some forms can even be deadly – including mine, rheumatoid arthritis, by complications. People lack a lot of sympathy when your disease isn’t listed as fatal, but doesn’t mean it isn’t in some other way.
I discovered the debilitating stigma behind arthritis, how it stumps diagnosis, treatments, advocacy, research and education for the long-term disability.
I’ve learned just how hard it is to raise money and awareness for a disease so commonly misunderstood and how that makes it even harder to live with three forms of it as a single parent. I learned the pain that my grandmother and aunt went through.
I’ve learned to appreciate the little things in life. I’ve learned to dislike greedy, selfish people even more than before, while trying to raise money and awareness for charity. There are so many things we think we need but in the end it ends up as junk collecting dust. I discovered how hard cleaning is with arthritis.
I’ve experienced what those side effects are really like when you see a pharmaceutical drug commercial. I’ve learned just how deadly they can be too. You can’t always see the side effects either, it’s not always vomiting, diarrhea or a rash.
I’ve found that marijuana really can be a medicine. It works well for sleep, pain and combating those pharmaceutical side effects I just mentioned. It helps with depression that affects my mind.
I’ve learned that arthritis is much much more than just achy joints. Having three forms really isn’t uncommon –once you get one, chances are you’ll get another one or two or more!
I know now chronic fatigue is much more than just “being tired.” it doesn’t matter what you do, that fatigue can weigh down on you like a dark cloud that just won’t fucking go away, even after unhealthy amounts of coffee.
I’ve learned what real friendships are, the ones who wills tick with you through thick and thin. I’ve learned family isn’t always what it seems and can be controlled easily by money.
Arthritis taught me to live more. I discovered the regret of things I put off until it was now too late for me to do. It may have taken things I loved away from me but I have also discovered more things I enjoy in life. I helped me discover more of myself and become a better parent.
Even though arthritis makes me physically more uncomfortable, it has made me more comfortable with myself.
It taught me how to fight. Arthritis taught me a lot in life. It forced me to grow up, sacrifice a lot and overcome a lot. It’s made me stronger. Sometimes there’s no second chances in life when it comes to health. Be grateful and appreciate what you do have, make the most of it. Don’t ever give up.
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