When you speak up or act on behalf of your rights and well-being, you’re self-advocating. If you have multiple sclerosis (MS), self-advocacy enables you to have more control over how your condition affects your life.
Self-advocacy is important in all aspects of your life. Your family, friends, healthcare team, and co-workers all need to know how they can support you and help you minimize the impact of your MS. Don’t be afraid to speak up when you need to.
Your family is an important support network in your MS journey. Be clear about the support you need, but also about the ways in which you’re still independent and capable. If your MS symptoms are creating new limitations, adjust your household roles accordingly. For example, you may no longer be able to carry a basketful of laundry up the stairs, but you could take over someone else’s job of folding.
Remind family members about the invisible cognitive problems that can develop with MS. This may include problems with high-level brain functions such as memory, focus, language, or problem-solving. The next time you’re forgetful or unable to focus, your family won’t misinterpret it as a lack of caring. When you’re tired, tell them — don’t assume they already know. Make sure that you communicate clearly and regularly.
Recognize and respect that each person in your household has their own coping mechanism when faced with a challenging situation. Some might prefer to immerse themselves in learning about your condition while others would rather be distracted from thinking about it. Tailor your self-advocacy communication to the comfort level of each family member.
Tell your friends how you’re doing. Make sure they understand that declined social invitations may be the result of your MS symptoms and not lack of interest. Suggest alternative activities that are easier for you, such as meeting for lunch instead of shopping at the mall. If phone conversations are tiring or interfere with your rest times, communicate electronically using texting, email, or social media.
Don’t wait for your doctor to suggest treatment options such as physiotherapy: Bring the topic up yourself. Keep a journal of questions that come up and ideas you have so that you remember to discuss them at your appointment. While your appointment might not be long enough for a lengthy discussion about the latest research, tell your doctor you have a few questions, and make sure that you’re given time to ask them.
Get second or third opinions if you’re not happy with what you’ve been told. If you don’t feel comfortable with the specialist you’ve been referred to, ask your doctor to send you to someone else. It may seem like you’re being critical when you do this, but doctors are professionals, and additional opinions and new referrals are part of their business.
If your MS diagnosis is new and you’re working, you have a right to privacy and aren’t obligated to disclose your diagnosis.
You also have a right to employment. If your symptoms progress to the point where your job performance is affected, you’re entitled to a reasonable accommodation as outlined in the Americans with Disabilities Act. Telling your co-workers about your situation also answers questions about changes in your behavior, such as fatigue, forgetfulness, or clumsiness. Chances are that the people who work with you will be happy to help you however they can.
In order to advocate for your rights, you need to know what they are. The Americans with Disabilities Act is designed to protect people against discrimination on the basis of a disability. Some of your many rights include equal access to employment, government facilities and services, public transportation, and commercial establishments. Spend some time familiarizing yourself with the things you’re legally entitled to, and share this information with your family and those who are advocating for you.
When you have MS, it’s important to advocate for your needs and rights. Self-advocacy matters everywhere, whether you’re with family and friends or your doctor or colleagues. Communicate your needs to those who can help, and learn your rights to avoid discrimination. Don’t be afraid to stand up for yourself, and encourage your advocates to do the same.