Living With Multiple Sclerosis

Strategies for navigating physical, emotional, social and practical challenges

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There is no getting around the fact that living with multiple sclerosis (MS) can be rife with difficulties. Most people often think of the physical ones, like pain, fatigue, and mobility issues. But you may also confront emotional challenges like anger, changes in your social interactions, and practical issues that may make simply getting through the day hard.

You can learn to weather all of these to the best of your ability. The key is not tackling everything all at once. Focus on one issue or related set of issues at a time, and you can see your life improve, bit by bit.

Emotional

If you have MS, there may be times when you feel pretty terrible and have a hard time finding anything to be happy about. That's natural. You are allowed to have these feelings. The key is to not get stuck in them.

Acknowledge When Things Are Tough

Sometimes the best thing to do is to allow yourself to feel sad or angry. Trying to force yourself to be happy can lead to frustration or even despair.

Rather than giving into negative thoughts, overcome them by reminding yourself that these bad feelings are temporary. You may not believe it at first, but keep saying it to yourself.

Recognize When You Are Happy

Constantly battling MS symptoms can eat up so much time that when you do get a break, you may forget about the positive things in your life. Even worse, when your symptoms are less severe, you might spend much of the time worrying about when they'll return.

Check in with yourself a couple of times a day and see if you can find times when you are happy. Spend some time thinking about the best parts of your life. You may also find it helpful to start a gratitude journal.

Don’t Compare Yourself to Others

People may think they are being helpful when they say things like, "Other people have it so much worse than you. Think about them and you'll realize your life isn't so bad." Of course, that's often not helpful at all.

It also might make you feel worse to think about how hard others' lives must be—or make you feel guilty for complaining.​

Do your best to avoid going down the comparison path. Remember that someone else's pain doesn't invalidate your own.

Build Your Resiliency

An ability to cope with and adapt to problems in a healthy way is called resiliency, and it's an important thing to have when you're living with a chronic condition.

You likely face barriers to resiliency due to your MS. Several of these were identified by a study published in Disability and Rehabilitation. They include:

  • Social isolation and loneliness
  • Stigma
  • Negative thoughts and feelings
  • Fatigue

The good news is that you can learn or improve this ability to "bounce back" from adversity. Some methods for this involve specific types of treatment and therapy, such as getting treatment for depression and anxiety, if they're problems for you.

If you believe you need help improving your resiliency, consider seeking the assistance of a psychologist.

Cope in a Healthy Way

Anger is a common issue in MS. Not only is it a natural consequence of having a chronic condition, the brain lesions MS causes may trigger anger just as they can blur your vision or make you clumsy.

A study published in the journal Multiple Sclerosis suggests that keeping anger bottled up can worsen the quality of life for people with this disease.

Whether you're struggling with anger or other emotions, it's imperative that you find healthy ways to cope. What will be most helpful for you will be very personal, but it's a good idea to speak with a therapist who can help put a name to what you're feeling and provide you with strategies that work best for you.

You may also find it helpful to speak with and hear from others with MS who very intimately understand the experience of this disease. You can search for a support group in your area by visiting the National Multiple Sclerosis Society's website.

A Special Note About Alcohol

Using alcohol to "numb" feelings is never a good solution for anyone. And while alcohol dependency can be damaging enough on its own, drinking can also make MS symptoms temporarily worse. Some MS medications can have dangerous interactions with alcohol as well.

Furthermore, people with MS because are more prone to abusing alcohol due to depression that can result living with a chronic, often limiting health issue.

Pay careful attention to how much alcohol you consume, how often, and how it affects you. And if you find that it's your feelings that have you reaching for a drink, speak with a therapist about ways you can cope without alcohol.

Physical

MS causes a lot of physical symptoms that can get in the way of your functionality and quality of life. It is important that you keep working with your doctor to find treatments that effectively manage your physical symptoms.

The invisible symptoms of MS are often the hardest to deal with. For many people, the major ones are pain, fatigue, and cognitive dysfunction.

Pain

Pain is a reality for about 50 percent of people with MS. It happens because demyelination causes nerve signals to get misdirected to pain receptors, which in turn send pain signals to your brain. When your brain receives a pain signal, you feel pain, even if it seems there's no reason for you to hurt.

Pain that's related to nerve damage is called neuropathy or neuropathic pain. In MS, types of neuropathic pain can include burning, tingling, or numbness; trigeminal neuralgia, MS hug, and optic neuritis.

MS also involves something called paroxysmal pain—often intensely painful sensations that come on suddenly and go away quickly. The spasticity and gait problems of MS can lead to joint and muscle pain.

A complex set of pain symptoms requires a complex approach. Your doctor can help you find medications that lessen your pain. You may also benefit from massage, physical therapy, or home treatments like heat or topical pain relievers.

MS: Painless?

Doctors used to be so certain that MS was a "painless disease" that complaints of pain caused them to move it down the list of possible diagnoses. Fortunately, that's no longer the case.

Fatigue

Fatigue is among the most debilitating symptoms of MS. It can result from the disease itself, as well as MS medications, related depression, stress, and overlapping sleep disorders.

It's important to work with your doctor to uncover the cause(s) in your case and find treatments that work. This might involve changing medications, changing the time of day you take certain drugs, treating sleep disorders, and improving your sleep hygiene. Cognitive-behavioral therapy may help you manage stress, as well.

Additionally, you can try daily naps, meditation, yoga, or other gentle exercise.

Cognitive Dysfunction

Cognitive problems impact at least 50 percent of people with MS. Commonly, this involves issues like not remembering names, difficulty processing new information or solving problems, and inability to concentrate, among other things. Depression, poor sleep, and some medications may only make these issues worse.

These symptoms can be frustrating and even embarrassing. When they're severe, they may become a major reason for leaving a job or opting for isolation over social events.

You may have success with finding ways to compensate, such as keeping a highly organized calendar or setting up alerts on your phone to remind you of appointments.

But if cognitive issues are significantly impacting your life, talk to your doctor about cognitive rehabilitation, which can help you improve your memory and ability to cope with these problems. You may also want to consider medications such as Ritalin (methylphenidate), which can improve concentration and attention.

Social

This aspect of dealing with MS is one that takes many people by surprise. Relationships can be affected in a host of ways that are important to be aware of. Here's a look at some of the common social challenges of MS.

Telling People

What to tell people about your health, and when, is unique for just about every situation. The conversations you have with your family and close friends, for example, will likely be very different from those you have with, say, your boss or someone you're newly dating.

In some cases, it can be a real benefit to have a conversation early. For example, if your manager doesn't know you have a chronic illness, she may not be understanding about problems like missing work or making a mistake. Disclosing your health status at work entitles you to reasonable accommodation as well, which may make it easier to keep working.

On the flip side, just because it's illegal to discriminate against an employee because of their disability doesn't mean it never happens. Some people are justifiably afraid that they'll be passed over for promotions or otherwise penalized at work because of their MS.

In the end, you're the only one who can decide when to tell people about your condition and how much to share.

Talking With Others About MS

When deciding to disclose the fact that you have MS, consider things such as:

  • Your comfort level with the person
  • The level of emotional closeness in the relationship
  • How comfortable you are talking about your condition altogether
  • How much they need to know in order to understand things that may happen, such as canceling plans, calling in sick to work, or your reaction to sudden, intense pain
  • Potential negative consequences of telling them now versus later

Parenting

MS can be a challenge for everyone in the family, and it can make you worried about the kind of parent you can be.

A key thing to remember is that a lot of people with MS and other debilitating diseases have raised healthy, happy, well-balanced children. Love and support can go a long way.

Experts believe it's best to be open with your child from the start. Kids often know something is wrong even when they're not told, and that can cause them a lot of worry and stress. Research suggests that children who have an age-appropriate understanding of MS can deal with it better.

Children can have different reactions to your illness, both at first and even years after your diagnosis. If they react with anger or frustration, remember that they're young and grappling with something difficult. Try not to take it personally, even if the way they express it feels personal.

If your child is having a lot of trouble, you may want to look into counseling or family therapy. Talk to your pediatrician as well as your own healthcare team for guidance.

Having a parent with a chronic illness can even have an upside. Many children of parents with MS say they have more empathy and a better perspective on what's important in life. It may also help strengthen their ability to cope.

Intimate Relationships

While sex is a physical act, it's one that plays an important role in a marriage or other intimate relationship. It's important that you and your partner talk openly about how MS may be impacting this part of your life. Couples' counseling can help you both articulate your feelings and find ways to restore intimacy.

These can be difficult conversations to have. When you do:

  • Be honest with your partner about what you are and aren't feeling. Help them understand what you’re experiencing so they can help find solutions.
  • Reassure your partner that you still desire them. Don't assume they "already know" or think you're showing them enough. Say it.
  • Don’t create false expectations. Focus on small changes and see what happens.

Understand that your partner may be hesitant about or avoiding sex because they're afraid they could hurt you. Teach them what does and doesn't cause you pain so they can be more confident and comfortable.

You Might Also Consider...

  • Experimenting with new sex positions, if some are painful.
  • Using a water-based vaginal lubricant to ease discomfort during intercourse.
  • Exploring the use of vibrators, especially if you are experiencing numbness or impaired sensation.

It can also be very helpful to expand your idea of what sex is. Just because you don’t have the energy for intercourse doesn’t mean you can't have a satisfying intimate experience. Hugging, kissing, touching, mutual masturbation, and even talking can help you connect and be every bit as arousing.

It's worth talking to your doctor about how your MS may be impacting your sex life, too. Physical factors, such as sexual dysfunction, loss of libido, and reduced genital sensitivity, can certainly compound psychological factors that interfere with sex, and there may be simple solutions that can help.

Medications prescribed for MS may cause sexual dysfunction as well. In most cases, this can be improved by adjusting the timing of the dose. In other cases, a similar drug may have a lower risk of this side effect.

Here are some examples of how meds can be managed:

  • If you have been prescribed an anticholinergic to treat a bladder control problem, take it 30 minutes before sex to minimize bladder contractions and prevent urinary leakage during intercourse.
  • If you are taking injectable disease-modifying medications, coordinate the timing of the shots so that the side effects are less likely to interfere with sex.
  • If you are taking an antidepressant and experiencing low libido, speak with your doctor. Antidepressants are commonly associated with sexual impairment. It is possible that a simple change of drugs is all that is needed to improve your state.
  • If you are on medications to combat fatigue, take them an hour before sex so that your energy levels peak at just the right moment.
  • If you take a drug that makes you tired, don't take it until after you've had sex.

Practical

A key to living well with your illness is to acknowledge and accept your limitations. Fighting them takes too much of your limited energy, and, as you've likely already discovered, it doesn't help your situation.

Taking Care of Yourself

A crucial step to practical management of your symptoms is learning to listen to your body. Pay attention to the signals that you're overtaxing yourself. Learn what can trigger relapses and what helps you achieve and sustain being in remission.

Something that's especially important is learning to say "no." While you technically could attend a dinner you committed to, for example, you'll be better able to manage your illness if you back out and get the rest you need on a day you feel particularly exhausted.

This can be difficult and might take some time on your part. And as you adjust, those around you must too. While you may not be living up to their expectations with the decisions that you make, you will be doing what's best for you—and that is something that most people who care about you will come to value, even if they might not seem to at first.

Prioritize your needs. Say "no" and be firm about it, with yourself and others. And put your energy into commitments when you have it to give.

Travel

Travel can be stressful and physically challenging when you have MS. If you prepare well for your trip, though, you can avoid some common pitfalls:

  • Transporting medication: Especially if you're traveling overseas, it’s smart to carry the original prescription and letter from your doctor indicating that the drugs are "chronic-illness medications delivered by injection for personal use." This will help in the event you are questioned by security.
  • Keeping medication cold: If you have to keep drugs cold, a small cooler is a good option. If you're flying, make sure it's approved as a carry-on so you don't have to check it and risk it being lost. Also call ahead to your hotel and ask if a mini-refrigerator can be placed in your room. (Note: Some keep-cold medications may be able to be kept at room temperature for a short period of time. Ask your pharmacist if this applies to those you take.)
  • Seeking help when flying: Check ahead to see how far apart your gates are for connecting flights. If it's very far, call in advance to organize wheelchair assistance or a ride on an electric cart. Ask about any other accessibility services the airport offers to make pre-flight security and check-in easier.
  • Traveling lightly: Everything you pack has to be carried at some point or another. Limit what you take to essentials and clothing that you can mix and match. Take advantage of hotel laundry services.
  • Stay hydrated: Doing so can help prevent constipation, mitigate some of the negative effects of jet lag (including fatigue, irritability, and lack of concentration), and reduce the risk of an airborne infection.

Special Occasions

Special events can really de-rail your efforts at managing your symptoms. Remember that you don't need to keep up with everyone and that you can (and should) pick and choose what you will do, contribute, and participate in. Attending and staying for just a short time is a good strategy if you feel that's all you can handle.

To navigate some of the challenges that can come with MS and socializing, consider:

  • Avoiding parties where you don’t know many people so you're not stressed about learning names (helpful if you have cognitive dysfunction)
  • Finding quiet corners where you can have more intimate conversations
  • Getting vaccinated against both seasonal flu and H1N1, and avoiding visiting with people who are sick
  • Eating before you go to a gathering so you can socialize without triggering swallowing problems
  • Dressing in layers so you can remove or add clothing to compensate for temperature sensitivity
  • Being as strict as possible with your bedtime and scheduled naps

The holidays can be particularly stressful and difficult on your symptom management. It can help to:

  • Shop before the seasonal rush or, even better, shop online
  • Plan all menus far in advance and get groceries delivered
  • Limit the number of holiday invitations you will accept
  • Use disabled parking spaces if you have a permit
  • Delegate whenever possible

A Word From Verywell

Learning to manage all of this can be overwhelming. Educate yourself and the people close to you, and take it one thing at a time. Eventually, it will all become second nature and you won't have to put so much thought into it.

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Article Sources

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