Why Are Scleroderma Patients so Stubborn?

Why Are Scleroderma Patients so Stubborn?

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A kaleidoscope of thoughts pass through our minds every second of the day. The unpredictable nature of a disease can change the way we think, rewiring our emotions and feelings in the process. A person with a chronic illness can feel alive and well one day, and feel like they’ve been used as a punching bag the next.

Many may become stubborn because of the sour taste of hopelessness that comes with permanent sickness. That stubbornness can leach into our lives and negatively affect our behavior. Taking a glimpse into the mentality and thoughts of a sick patient can help those around us understand our affliction.

As a sickness runs rapid through your body, experimenting with different medications becomes a detrimental necessity. Sometimes it’s daunting to know that some are guaranteed to work, and some aren’t.

Here are different types of meds used to treat scleroderma, and what their original intent

Immunosuppressants: Used to calm down an overactive immune system. Immunosuppressants were created for those who have had an organ transplant so their body didn’t reject the new organ (lungs, heart, kidney).

Chemotherapy: Used to take away joint pain. Chemo was created to treat cancer by regulating bone marrow and lowering blood counts. It is also used to treat arthritis and psoriases.

• Steroids: Often used to bring down inflammation throughout body. They were created to suppress the immune system and help calm down inflammation.

Plaquenil: is used to regulate joint pain, and was created to treat malaria.

Although there is no specific FDA-approved medicine for scleroderma, a lot of research studies are underway that will hopefully bring us closer to a cure.

In the meantime, these forms of treatment have had some success in moderating progression. I am on all of the above (minus chemotherapy). It can take time to figure out your magic concoction, one that pertains to your specific symptoms. Sometimes during this process we have to endure uncomfortable side effects from experimenting. It’s a catch-22 because if we don’t take them, we get sicker. Like Goldilocks and the three bears, it is possible to find one that’s just right.

The task of experimenting can leave us with feelings of deep resentment, because it becomes frustrating and overwhelming when reality starts to sink in. This, in turn, is what feeds the stubbornness of scleroderma patients. We are so sick and tired from what we’ve been through, that when the doctor wants to add another medication to the 15 pills we’re already taking a day, we react.

I’ve made the mistake of not taking my medication, and it only results in wasted time. Time spent stressed and anxious about the medication just allows my disease to creep deeper into my body. How am I supposed to know what works if I never try it?

The problem is that scleroderma takes control of your life, until it seems that you’re no longer in control of anything. It sounds stupid, but putting important things on the back burner feels like you’ve gained a little bit of control back. The real control you want to get back from your old life doesn’t exist in today’s reality.

So my message to all the patients out there is to stop being stubborn. Mentally it may feel good, but physically you’re doing more harm than good.

Get those tests done. Try the new medication. Swallow that huge pill of reality and wash it down with triumph. You can get some control back, you just have to keep an open mind and adapt to the life that now is ours. Own it. Show others how badass you are in this crazy maze.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

3 comments

  1. Tomisa Starr says:

    To paraphrase the words of the late, great comedian, Rodney Dangerfield: “Scleroderma patients don’t get no respect!” There are so few of us, compared to those who are fighting cancer, diabetes and a host of other chronic diseases that are much more well known, and which garner the lion’s share of research dollars. We suffer, fight – and die – in silence and relative anonymity, even in our own families and among our friends, because Scleroderma is still stereotyped as “just a skin disease”, when it is even known at all.

    ____”My Scleroderma Struggle Continues”____

  2. AK Wolfe says:

    Thank you for this article. Yes, I am stubborn. I was given a prescription for an immunosuppresant a couple of months ago. I did take it for about 10 days. I felt so bad I stopped taking it. While on it, it made me feel as I did when I was first diagnosed. Maybe I will try again. Hmmm… Maybe…

  3. cindi says:

    it is true i can be very stubborn… an i do need to feel somewhat n control… an some of the meds do scare me… its really hard

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