Scleroderma can be a very frightening disease to be diagnosed with. It’s common to feel dreadful when learning the different affects it can have on your body. Between the ulcers, skin tightening, and plethora of other symptoms, it’s terrifying. But, there are ways to cope and conquer the disease, with these few tips.
1. Outreach and Support
Talking to other patients who can understand exactly what you’re going through, is very cathartic. It makes a world of difference to reach out within online forums, support groups and social media. It tones down the scare factor and makes the disease seem more conquerable.
Inspire Forum - the largest forum amongst patients, filled with their insights, questions, or simply just venting frustrations
Project Scleroderma - Watch videos tailored around a wide range of interesting topics pertaining to scleroderma
2. Finding a specialist
One of the greatest hurdles to overcome is finding the right doctor to treat you, tailored to your specific form of scleroderma. It’s alarming walking into different doctors’ offices and have them tell you they have little experience with the disease. At that point, it’s time to go back to the drawing board and search for someone else. Always call the physician's office ahead and ask if they see patients with scleroderma. It takes a lot of research and phone calls to many different doctors offices, but eventually everyone finds someone they like.
There can be an immense fear in taking different medications, and the side effects looming behind them. Scleroderma used to be harder to diagnose, but there are strides being made in the medical field, in favor of treating it. Fortunately, in the past decade there have been numerous clinical trials geared towards scleroderma patients. This has lead to major leaps in treating the disease to a sustainable level. Contacting a specialist, and having them tailor your specific type of scleroderma to a cocktail of medications, can possibly lead to a stable life.
4. Remain true to you
The disease must not define you, even though it can change you. Twisted fingers, pained joints, horrible digestion, amongst many other crappy symptoms, can take it’s toll on one’s body. But if the fear of the unknown takes over, it’s had to stay conscious of the present moment. That’s all we truly have to hang onto, is right now. Sometimes we have to mourn the lost parts of ourselves, and learn to love the new parts. If your favorite pastime is dancing, find a way to kept going! Do not let scleroderma steal your light. You still have the light within you, it just shines a little differently.
5. Reach out for help
Caregivers are the backbone of a disabled person’s life. Whether it be a medical aide, friend, or family member, they’re the one’s who help life go on. It can feel like you’re drowning quick, if there’s no one around to help. Panic, anxiety and frustration take over in these moments, which can lead into depression. Reaching out for help is almost as important as taking medication. Once someone is consistently helping, it frees up a part of your mind that can be used for other things. If you’re on disability, the state can pay for you to get help from a Home Health Aide. Just contact your local disability resource office or insurance.
Scleroderma itself has so many intimidating factors that can shake someone down to their core. It’s a soul-changing experience for those diagnosed, and those surrounding them. But following a combination of the tips above, can make this journey a little smoother.