Mobility aids can make life with multiple sclerosis easier and more comfortable. These devices can give you back the freedom to go places and enjoy experiences you may have thought were relegated to the past. They can keep you safe and make you feel secure in your own body.
However, they can also make you feel like a target for judgment.
Understanding why people with multiple sclerosis often use mobility aids in an ambulatory fashion can give users more confidence in their choices. It can also help those they encounter every day to realize that changing needs and abilities should be accepted as part of life.
What are Mobility Aids?
Generally speaking, a mobility aid is anything that helps you become or remain mobile. For most people, this includes one or more of the following:
- A cane or walking stick
- A rollator
- A wheelchair
- A motorized scooter or chair
- Specialized crutches or braces
People with mobility issues may use one, several, or all of these devices at different times and for different reasons.
Unfortunately, the term “mobility aids” has a lot of baggage attached to it.
Some people think of these items as burdens. You may indeed have to plan ahead or alter your lifestyle somewhat to ensure that you can use your mobility aid effectively. For this reason, some people choose to forgo using them until it becomes unavoidable.
Other people love their mobility aids. I am in this latter group these days, as I love the freedom that my aids give me. If my leg gives out, having my collapsible cane with me means I am less likely to fall and still able to finish whatever activity or outing I am on with my family or friends.
Regardless of what you think of mobility aids, their use for people with multiple sclerosis and other chronic illnesses and disabilities can cause myriad emotions for users and perceptions from others.
Why is Mobility in Multiple Sclerosis Sometimes Inconsistent?
One of the reasons why people with multiple sclerosis may avoid using mobility aids is because they do not always need them. They may not want to invest in a mobility aid that they will not use frequently enough to warrant the expense. Likewise, they might be worried about what people will think about seeing them using a cane or rollator one day and no mobility aid the next.
The latter concern may seem strange, but anyone who uses a mobility aid and is not visibly disabled or elderly can likely attest to how uncomfortable it can be. Having people stare, make comments, or ask questions about your use of a mobility aid is embarrassing, discouraging, and frustrating. While some of these comments may be innocent, others can be malicious and judgmental – and all are unnecessary.
Because of the progressive nature of multiple sclerosis, a patient is likely to suffer more serious symptoms as time goes on. Many also have symptoms that come and go in “flares”. This means that some days will be better than others regarding pain, stiffness, numbness, and the ability to control the body effectively.
Many people with multiple sclerosis choose to use mobility aids only when they feel they need them most. This is known as ambulatory use. As a result, however, they may deal with people wondering where their cane or wheelchair is when they encounter them without it.
Explaining Changing Mobility Issues to Others
One of the most difficult aspects of having multiple sclerosis or any other chronic illness or disability is others’ opinions. We all worry about what others think of us, but these fears sound louder in a mind that is already echoing with the worries that chronic illness causes.
Many people already struggle with accepting their need for mobility aids. You may feel societal pressure not to use a cane, wheelchair, rollator, or other mobility aid under a certain age, or if you are capable of walking at all. Some people also worry about what others will think of them if they see them using a mobility aid.
This is often amplified when a person’s mobility issues are inconsistent. A common concern is that if you need a cane or a wheelchair sometimes and not others, people may think that you are “faking” your need for it when you do use it.
In a perfect world, no one would think twice about another person’s use of mobility aids. No one would stare at someone in a wheelchair or give a cane user a second glance. In that same perfect world, no one would care if other people used a cane one day and nothing the next.
Unfortunately, we do not live in that perfect world – and you may find yourself explaining your changing mobility needs to others.
It may be simple. If you tell someone that you have multiple sclerosis and you have good days and bad days as a result, they may accept that answer and move on. Others, though, may have more difficulty understanding. If you are having difficulty with this kind of explanation, it may be helpful to use creative descriptions to get the point across.
The Makeup Metaphor
When it comes to explaining the ever-changing need for mobility aids with multiple sclerosis, I like to use a metaphor. Specifically, I like to use the metaphor of makeup. While not everyone uses makeup, they are likely to be familiar enough with it to understand.
People who use makeup regularly do not use it all the time. A person may use it solely when they have a special event. They may use it when they are leaving their home or being seen on camera, but not around the house. Or, they might wear it daily – but they will undoubtedly remove it to sleep at night. It is all in what makes them comfortable.
While this might already be a fitting metaphor, I want to get more specific. I want to talk about the need for concealer or other products that hide imperfections.
Maybe on Monday, you are tired. You might wear concealer under your eyes to camouflage that. On Tuesday, though, your skin is clear and bright. You decide you do not need any makeup that day. On Wednesday, you wake up to a new breakout. That day – and the next two days – you use concealer and maybe even foundation to cover that blemish. By the weekend, though, your skin has healed and you are makeup-free once again.
This is a scenario that many people have either experienced or know someone who has. It is also the way I like to personally think about my need for mobility aids. Some days I need my cane. Some days, I need my cane and my rollator, or just my rollator. Other days, I am totally fine without either. It depends on what my body is doing and how comfortable I feel on my feet that day.
Remember that ambulatory use of mobility aids is common with multiple sclerosis. The ultimate goal is for you to find an aid that makes you feel comfortable, supported, and mobile. What other people think will always be second to your own opinions and those of your healthcare team.
The Bottom Line – It Is No One’s Business
Ultimately, it is important to remember that your health and how you care for yourself and manage your symptoms is your private business. While this post is designed to help you cope with the curiosity that well-meaning people may show in those things, you do not have to be polite in how you respond.
You can be blunt, straightforward, or even rude.
This is especially true if the person you are speaking to is rude first. When it comes to answering questions about your health, you always have the final word. If that word is no – or something coarser – you have nothing to feel sorry for.