When first diagnosed, most people living with MS experience infrequent weakness in limbs, slurred speech, and extreme fatigue. However, as the disease progresses, these symptoms gradually get worse and appear more often. Eventually, people living with SPMS (a more advanced stage of MS) live with frequent muscle pain and spasms, incontinence, mobility limitations, and increased cognitive difficulties.
Fear of disease progression is an understandably frightening thought that affects over 400,000 people in the United States who are living with MS as well as countless other conditions.
Our mission is to help people share their experiences so that others feel less alone. We asked people living with multiple sclerosis what they would say to someone who fears progression of their MS. While the responses are from people with MS we feel they have the power to impact LOTS of people across many conditions.
Here’s what they had to say:
1. You are not alone.
“Your fears are warranted. I fear it too. We have each other.” – Anonymous
“It’s hard to give advice because I am afraid as well.” – Anonymous
“Progression is one of my biggest fears right now. I was just crying to my husband about this, seriously, yesterday. I feel like my mind is slipping more and more.” – Kelly
“I fear it as well. It’s very real.” – Dawn
“I’m right there with you.” – Maegan
“It’s okay, we are all in this together.” – Cher
“You are not alone (although it’s easy to feel we are). We all fear progression.” – Kelly
2. Don’t give fear too much power.
“Fear of the unknown cripples you more than the disease itself.” – Anonymous
“Don’t fear progression, you’re just wasting energy that you need for maintaining your health.” – Lisa
“Fear causes stress, stress causes anxiety, and anxiety causes sickness. Be careful what you think because your body is paying attention.” – Rebecca
“Fear is normal, but don’t let it control your life.” – Cathy
“It’s understandable, but fear can be more crippling than the actual condition.” – Lisamarie
“I’ve spent so many years living with crippling fear that MS would flare up or become worse. The fear wasn’t worth it.” – Jon
“Unfortunately, worrying about it doesn’t stop it or change it.” – Tiffany
3. Preparing for the future may offer you some peace of mind.
“Make a life plan that takes into account difficulties and what you may do in case. It may not happen, but it gives peace of mind and an action plan.” – Kim
“Do your research and communicate with your MS specialist. Make adjustments to your routine to address your physical changes. Most importantly, don’t be afraid (too long) because you’ll manage disease progression with the right plan and support team.” – Tracy
“Starting and staying on a treatment is key, and you can and will find one that works for you. It can be a bit of a learning curve to find one that works, but there are so many you will be able to find something.” – Becky
“Stay active, eat healthy, take your meds and stay informed. Prepare for the day that progression comes and have a plan for it.” – Dodie
“Take the MS treatments. Try to incorporate an exercise routine into your schedule and embrace things that will make your life easier.” – Tina
“Taking your medicine is key. Stay on top of anything you can do to slow the progression, meds and stay active in your daily life. Don’t just give up working, vacations, living. Keep going!” – Jasmin
“There is no way to predict how MS will act from one person to the next and worry just makes it worse. There are great therapies and medicines out there now that weren’t there even 20 years ago so get all your information. Make a plan to manage your symptoms, it’s very empowering! There is so much about MS that you can control.” – Mary
4. Build a support system.
“Consider involvement in a MS support group to learn from the experience of others.” – Anonymous
“Talk to others, you are not in this alone!” – Anonymous
“Talk to your family/close circle about your fears of progression and how they can help if and when progression should occur. Make a plan. Be informed of local and national MS associations/groups and what they have to offer.” – Anonymous
“Talk to someone and write [about] what exactly is making you fearful of the progression. I have learned that if you speak or write down what you fear it loses some of its power.” – Darcy
“There is a lot of support on social media if you need some extra support.” – Christine
“You must establish a support system, including family/friends, health care providers, counselors/psychologist…and fight for yourself.” – Becca
“Surround yourself with people who love you, especially an MS support group where you can really connect with people. Don’t isolate yourself.” – Brenda
“Positivity and support from loved ones and the right people in the medical community can keep you strong.” – Amy
5. Don’t forget to live in the moment.
“No two paths are exactly the same. Until you absolutely cannot do something keep doing it. I was told not to expect to run or have children at 25. I have two beautiful girls. I have run more in the last decade than I ran from 1995 -2005. I make it a point to enjoy the activities that I am able to still do.” – Anonymous
“Changes are always difficult to accept. However, I feel that while I have lost many things due to MS, I have also gained much – and refocused my life and appreciate many things that in the past were taken for granted.” – Paul
“Dwell on what you can still do and not on what’s been lost.” – James
“I feel that life is a journey. As we get older our body changes. Maybe we can’t see as well or we’re a little slower. I make sure I’m aware of my limitations, but it doesn’t stop me. You can work full time, workout, go on vacations, date, and overall enjoy your life. It may not be how you envisioned it, but when does life ever workout exactly how we planned?” – Genie
“It’s okay to be a little scared from time to time. Emotion happens. You have to make the most of life though. If you are paralyzed by fear, then MS is continually robbing you. Looking back over the last 20 years with MS I can say I have been blessed with numerous beautiful experiences that would have never happened if I had allowed myself to have an ‘it’s over’ attitude and hunkered down because of fear.” – Rachel
“Progression fears are normal, but you can’t let them overwhelm your thoughts and keep you from living and enjoying the life you have now.” – Amanda
“Unfortunately, there is no magic formula to predict how this disease may or may not progress. The best thing we can do is try to focus on making our lives as positive, fulfilling and productive as we can.” – Kristin
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