Chronically Speaking

Have you ever had the moment where you get such life changing news that you freeze and can see and feel your entire world crashing around you.  Everything suddenly makes sense and your brain is making connections and explanations for things you once couldn't explain. This was how I felt being diagnosed with Lupus. It was all very overwhelming, and you're not told how much your life will change, or how to cope with it all.   I have been tired and fatigued my whole existence and never thought anything of it.  I thought waking up in the morning was physically painful for everyone.  I've always fractured bones easily and had numerous other injuries throughout my life and could never figure out why.  I had daily migraines and was told by doctors that it was hormonal and that I would outgrow it.   Fast forward to age 23 when I was recovering from having the meniscus in my left knee removed.  I had made an appointment with my sports medicine doctor because I thought I had possibly

  One of the things I really struggle with as a chronically person is when people close to me don't feel well or have a sore joint and act like it's the end of the world.  I understand it sucks to be sick and in pain, I am every single day all day long. They get one minor inconvenience and they're able to take the day off and I end up taking care of them.  That's fine and I don't mind except I'm worse than that on a daily basis and no one is fussing over me or saying, just take it easy.  It builds a lot of resent for me because I wish I were able to feel so good most of the time that one symptom seems like the end of the world to me.   Because I am chronically ill, I am just expected to get used to it, or suck it up and still function like everyone else. A "normal, healthy person" would never function under the circumstances that we do.  Their minds can't even begin to comprehend the level of illness and pain we function with. I wish I had that pri

Like many, my thyroid journey is complicated and very frustrating.   For years I complained of pressure in my throat and would choke on food and even water.  Doctors would dilate my esophagus and send me on my way.  This never really fixed the issue, but they didn't suspect anything else being wrong.  I had a friend suggest that I get my thyroid checked out, but none of my doctors thought it was an issue and I was ignored. In 2015 I moved to Florida and within one visit with my new rheumatologist, I was referred to an endocrinologist.  The endocrinologist felt my neck and said everything felt normal, but he would go ahead and do an ultrasound to make sure he wasn't missing anything.  During the ultrasound they found a 2mm growth on the backside of my thyroid. Because it was on the backside, I didn't physically show any sign of a growth, or issue. The doctor wanted to biopsy the growth to make sure it wasn't cancer.  They took 10 biopsies. That means that while I was awa

The reality of being on disability is awful in many ways. It's necessary for many sick people, but it's stressful and frustrating. They make you fight for your years to prove you're sick enough for disability, then they trap you into a life of poverty, harassment, and discrimination. The government does everything they can to make sure you're struggling in every way possible. I truly believe they hate the disabled.  It took me two years to get my disability approved. I was instantly denied every time due to my young age and high level of education. It takes hours to fill out the paperwork and they didn't bother to read it. Just sent a denial letter and ask you to fill out the same paper work if you want to apply again. I can't even remember how many times in two years I sent in that same paperwork. I have severe arthritis and was not going to fill that out every time, so I scanned it, saved it, and would just print and resend. I ended up getting an attorney

I truly believe people want to help us feel better about our situation, but they just don't know how. I hate positivity about horrible situations. It's toxic and more harmful than just being honest and saying that does really suck. I don't think healthy people say these things to make us feel worse, but they do. If you have a chronically ill, or disabled person in your life, please do not say these things and I will explain why below. It could be worse, or other people have it way worse than you do. DO NOT SAY THIS. I cannot begin to tell you how many people have said this to me. Yes, some people do have it worse than me, but that doesn't mean my pain and suffering don't matter and isn't miserable and absolutely killing me on every level. This completely diminishes my pain and tells me you don't think I'm suffering enough and that my pain doesn't matter. It's not a competition. Pain and suffering is pain and suffering on every level. Nothing a

The one major aspect that the doctors don't warn you about when you're diagnosed with a life changing illness, or disability is that you will grieve your health, past life, and what you wanted for your future every single day. You're grieving your own life. Who you were and wanted to be died, but some part of you is still here, slowly fading and just watching. It's absolute torture and it's so heavy to carry. For me, this one of the most lonely and devastating feelings and one of the worst aspects of being chronically ill. Somedays the grief is quiet and other days it screams and it's all my brain can focus on. Most people can't even begin to imagine or comprehend what this is like. Most people don't even realize this is something that happens to a small percentage of the population. There are five stages of grief: Denial, anger, bargaining, depression and acceptance. You don't always feel them in this order and you can experience multiple stages a

I'm a 36 year old female who is chronically ill, disabled and currently at the end of her rope. (I've decided to attempt to remain anonymous, but that may change at some point.) I'm exhausted on every level and tired of countless doctor appointments, surgeries and being picked and poked at. I was originally diagnosed with Lupus SLE at age 23, but since then I've acquired many more diagnosis such as Rheumatoid Arthritis, Fibromyalgia, Interstitial Cystitis, Severe Asthma, Chronic Pain, Chronic Fatigue, Anemia, Hyperthyroidism/Hypothyroidism, Polyarthopathy, Tachycardia, Migraines, Chronic Urticaria, Panic Disorder, Depression, Generalized Anxiety Disorder, Social Anxiety, spinal stenosis in the neck, hernia discs, severe reflux and hiatal hernia. I also recently found out that I have labral tears in both hips with a cyst in the right hip. I'm currently awaiting my appointment with a specialist where I'm going to be told I need total hip replacements. Looking back