Secondary progressive multiple sclerosis (SPMS) can have a big impact on your life, including on your emotions. You may have powerful feelings that are hard to manage. You may feel angry, stressed, anxious, sad, or confused.
No matter what emotions you have, it’s OK. You can learn ways to manage your feelings about SPMS, feel more calm and centered, and reduce stress in your daily life.
What Happens When You Find Out You Have SPMS?
Your diagnosis may not come as a surprise to you. More than 80% of people who have relapsing-remitting MS (RRMS) move on to SPMS within 20 years. And 10% of people who are first diagnosed with RRMS develop secondary progressive MS within 5 years.
With SPMS, you may have symptoms that gradually get worse, including more disability and mobility challenges. You may not always have periods of remission, when your symptoms are less noticeable.
You may feel:
Shock and confusion. Shock is one emotion you may have when you hear that you now have SPMS. You may have just thought your worsening symptoms were the type of relapse you have had in the past. You may have thought your symptoms would improve.
Sometimes, MS symptoms change very gradually, so you may not have even noticed that anything was different. You may be confused or upset by your new diagnosis.
Guilt and self-blame. You may think that since you took your medications as your doctor prescribed, your MS would stay the same.
You may blame yourself for your MS getting worse, as if you did something wrong, or wonder why this happened to you.
Worrying. Worry is another emotion you may feel when you learn you now have SPMS. You may worry about not being able to continue working or paying bills. You may worry that you’ll have to be in a wheelchair for the rest of your life or that there won’t be any treatments for SPMS to relieve your symptoms.
You may also worry that you’ll fall and hurt yourself. You may be so worried about falling or looking different when you walk that you start to avoid going out.
Loss of control. Even if you expected that someday you would progress to SPMS, you may still feel you’ve lost control of your life and independence. You may be uncertain about your future and how your life will change with SPMS.
What you can do:
- Don’t blame yourself! You didn’t do anything to cause your disease to progress to SPMS. Even when you take your medications, MS can progress.
- Remind yourself that SPMS affects each person differently. About two-thirds of people with SPMS are able to walk and don’t need a wheelchair. You may benefit from a mobility aid, like a cane or walker, at some point. Some people with SPMS use a scooter or motorized chair for more strenuous activities, but not all the time.
- Talk to your physical therapist (PT) about your mobility. They can help you adjust and cope with these changes. They’ll gently guide you on how to use mobility aids like a cane, walker, or scooter properly, so you feel safe and confident about going out and doing activities you enjoy.
- Talk with your doctor or nurses about SPMS disease progression and what you can expect. Speak up if you’re worried about your mobility getting worse or what you can do to stay independent. Your doctor can refer you for mobility testing and treatments that help.
What's It Like to Live With SPMS?
You can experience gradual changes to your body and your lifestyle. You may have more trouble with walking or balance, bladder or bowel control, and sexual function. You may also have:
Self-image changes. The changes to your body with SPMS, and missing out on social activities or dating, can cause you to have a poor self-image. You might no longer recognize your own body or feel attractive. You might feel like you’ve lost your dignity.
Isolation and loneliness. If you’re worried about how you look to others or that you might fall if you go to a party, you might just stop socializing. It’s common for people with SPMS to feel lonely and isolated as symptoms get worse.
Even if you were able to cope well with MS in the past, SPMS may bring new, shifting emotions. Over time, you may feel:
- Embarrassed by changes to the way you walk or the need to use a cane
- Trapped because you can’t do the activities you once enjoyed
- Fear that if you go out in public, you’ll fall or soil yourself when you can’t control your bowels
Overwhelmed. You also may have more medical appointments as you live with SPMS. You may feel that you don’t have time to meet your friends for lunch.
Planning your schedule to fit in social activities, therapy, and doctor’s appointments can feel like a lot of work. You may be overwhelmed and just do nothing. You may find that your symptoms aren’t what make you feel sad or frustrated, but instead the loss of your social life and connections with other people.
Feeling like a burden. You may also feel that you have to depend on friends or family members to help you all the time. This can cause some of your relationships to strain and break down. Feeling lonely, needy, and isolated lowers your quality of life.
Here are some things you can do to make your life easier and better:
Adjust your activities to suit the new you.
- Cut back on the activities you do, but don’t stop socializing altogether.
- Make simpler plans that are easier for you to do.
- Accept that you may need to go at a slower pace at times, but you can still do many things you enjoy.
- Look for small hacks to make activities less stressful. If you join your friends to prepare a group meal, for example, sit on a high chair while you slice veggies instead of standing up at the counter.
Make a plan. Here’s some examples:
- Give yourself enough time to get to the restaurant. Plan how you will get into the restaurant without falling, like taking your cane with you.
- Plan to be in a place where there’s a toilet at the time when you’re most likely to need it, like 20 to 30 minutes after you finish lunch or coffee.
- Carry pads, extra undies, or odor control products in your bag, so you have them on hand if you have an accident. Planning for bathroom accidents may help you feel more relaxed when you go out.
Stay busy. SPMS doesn’t mean you have to stay home all the time. Being busy and involved in your community can lift your spirits and make you feel more valued and less worried. Here are some things you can do to reconnect with others:
- Sign up for volunteer work.
- Take classes.
- Talk to people who are newly diagnosed with MS so you feel like you’re helping others.
Get out there and move. Staying in because you’re afraid of falling can have the opposite effect than you intended. Here are some reasons to stay active:
- If you don’t, your mobility can worsen.
- When you’ve not active, you can lose muscle strength, stamina, and balance. You may fall more often.
- Stay active, go out with your mobility aid in hand, and enjoy life.
It’s OK to ask for help and support. If you feel unsure about asking for help, remember:
- You’re not a burden!
- Your loved ones, friends, family, and community, such as neighbors or church groups, want to support and encourage you and help you cope with your emotions.
- If you need help or someone to talk to, people who care about you will be there for you.
- If you stay as social and active as possible, it may lift your mood and improve your outlook with SPMS.
What Coping Strategies Can Boost My Emotional Health With SPMS?
Life with SPMS can be stressful and take a toll on your mental health. Here are some tips, strategies, and practices to help you cope with your emotions in a healthy, positive way:
Practice mindfulness. It’s a technique to help you mentally step away from stress or sadness. You’ll learn to focus your mind and thoughts to find calmness and relaxation.
You can learn mindfulness techniques from online or in-person classes, apps, or books. You can also just take time to chill when you’re very stressed. Listen to soothing music.
Try an MS yoga class or video. Yoga may improve your mood and mobility. Yoga combines gentle stretching, moves to strengthen your muscles, mindfulness, and relaxation. Practice your yoga regularly to see the most benefits.
Release your emotions! Don’t keep everything you’re feeling inside. Write your emotions, fears, or stresses down in a diary or blog. Crank up the radio and sing along as loud as you want. Talk to people you trust, like your close friends or a counselor, about your feelings.
Find distractions. When you’re stressed or worried, find something to occupy your mind to crowd out negative thoughts. Read a new novel, play a video game, or make a date to go out for dinner with your spouse or a friend.
Get some physical activity. Exercise can help you release tension and stress. If you’re able to, get outdoors, take a walk, and get some fresh air to clear your mind and relax.
Explore your spiritual side. Find ways to connect to your inner feelings, values, and ideals to stay centered and calm as you cope with SPMS. For some people, this may include praying, attending religious worship, or just meditating. You may also find a spiritual connection to nature, people in your life, music, or art.
Instead of feeling helpless, think about the ways you are strong and resilient. Remember that your life has purpose.
Keep laughing. Remember, you can’t always control your emotions or the physical changes that SPMS brings. Don’t let your fears or worries keep you from engaging in life. It’s OK to have a sense of humor about your ups and downs.
Find something that makes you laugh, like watching comedies on TV or reading a funny book. Laughter and humor actually relieve stress. There’s even research that shows that laughter can boost your immune system and reduce pain.
Join an MS support group. You’ll learn emotional support and coping strategies by talking with others who live with SPMS. Support groups may be in person or online. You’ll also learn more about your condition, new medications, and ways to deal with symptoms and physical and emotional challenges.
Connect with your peers and give each other emotional support. You will feel more hopeful and valuable.