Dear newly diagnosed person,
Hi and welcome to the club you most likely have zero interest in joining. Or maybe you’re like me and relieved and shocked all at once to have a label for what’s going wrong with your body, to finally have a name for it. I pray it didn’t take five years to get your diagnosis like it did me.
If you’re surprised about your diagnosis, I’m so sorry. I’m so sorry even if it wasn’t a surprise. Life isn’t fair sometimes. Diseases shouldn’t exist. Life should be easier than the road you’re about to travel. Don’t lose hope though. Just like before, life has it’s ups and downs. It’s up to you to decide what to do with them.
There’s information being thrown at you. It seems like it’s coming from every direction and so hard to take in. Breathe. You may want to learn everything you can about multiple sclerosis (or whatever your diagnosis is), but you can’t, not really. MS is not the same for everyone. You can become educated though. Here are my tips for the newly diagnosed
- Make sure your information is coming from reliable sources. Limit internet research. It can be very misleading.
- Lean on your family and friends that want to help. You will need their support more than you could imagine.
- Understand that some relationships won’t last, but the best ones get even stronger.
- Find a support group locally and/or online. No one truly understands like someone else with MS. Disease courses can be different, but they can be on similar paths.
- Understand that emotional changes like mood swings and anxiety can become a problem with MS. Don’t only be expecting physical issues. Take care of mental health. Issues can sneak up suddenly.
- Don’t think everything is going to happen at once, but don’t think that nothing will ever happen either. There are different types of MS. Some have remission periods. Some don’t. Even flare free times don’t mean we are free from MS.
- Value hobbies– things that create happiness. They make the time pass easier during hard days.
- Learn the importance of comfortable shoes and clothes. Uncomfortable is no fun and MS is uncomfortable enough already.
- Think carefully about who you tell about your diagnosis. Telling an employer can negatively impact your career path and affect job security. Learn your rights under the Americans With Disabilities Act.
- Track your symptoms. Write them down. Don’t rely on your memory. Early on doctor appointments may be scary. As the disease progresses, memory issues may be a problem.
Don’t lose sight of hope. There is no cure for MS, but research is ongoing. Improvements in treatments are being made and for many, disease progression can be slowed. There’s hope for future treatments that restore lost functions and abilities.
Ellie is a 45-year-old woman living in South Carolina. She works as a cashier, but is always dreaming of more — she’s just not always sure of what “more” is. Her favorite hobbies are reading and reading book reviews. Within the first few minutes of meeting her, you’ll realize her nephews, niece, books and cats are her favorite things.
Please watch and share our MS Awareness video.