Multiple sclerosis (MS) is a long-term (chronic) disease that affects people in different ways. It’s natural to feel worried, scared, moody, cranky, and anxious after being diagnosed. It’s not easy living with a chronic illness. If you’ve been diagnosed with MS, there are several resources and support services available to help you if you need them.
Consider the following suggestions.
Take Control of Your Health
You are the most important member of your care team. Find a doctor who speaks with you clearly and makes you feel respected. Your doctor should also make you feel comfortable talking openly and be someone you can trust. Prepare in advance for each appointment:
- Make a list of all the questions you want to ask.
- Keep your medical history up to date. Be sure to include all the symptoms you have.
- Make a list of all the prescription and non-prescription medicines you take, including vitamins and supplements. Be sure to write down the name and dosage of each medicine.
- Ask a loved one to go with you to your doctor’s appointments for emotional support. A loved one can also help you remember what your doctor tells you. If no one can go with you, you can record the appointment and listen to it later.
Get Your Closest Family Members Involved
A diagnosis of MS doesn’t only affect you but also your loved ones. Some of them might have to get used to the changes this disease brings, especially if they live with you. For some Hispanic people, it can be hard to understand the symptoms of MS and how they show up. For example, some family members might mistakenly assume that some of the symptoms affecting you can be overcome if you just think positively. It’s necessary for them to understand that if you get tired and have to go to bed, it’s not because you’re giving in to the disease.
Ask your doctor to recommend an educational program for you and your family members. These programs are usually offered at some hospitals or non-profit organizations. The goal is to raise awareness about MS with discussion panels, community events, and recreational activities. Your loved ones can learn:
- What the possible symptoms of MS are and how to manage them
- What your treatment plan is
- What the latest clinical research has found
Take Care of Your Mental Health
When you have MS, your mental health can be affected by neurological factors. If you have anxiety or depression, don’t hesitate to contact a mental health professional, especially if symptoms continue for more than a few weeks or months.
According to many clinical trials, Hispanic people are less likely to see a psychologist or psychiatrist than people of other races and ethnicities. There are various reasons for this reluctance, but for some Hispanic people, it’s the fear of being seen as “crazy.”
It is essential for the medical community to prepare educational materials for the Hispanic community that emphasize:
- The importance of mental health care
- The value of getting psychological help and that it’s not a sign of weakness or insanity
People with MS tend to feel depressed after being diagnosed. If symptoms of depression are interfering with your regular activities, talk to your doctor. Ask for a referral to a mental health specialist, preferably someone who has a good understanding of MS.
Rehabilitate Your Body
If MS affects your speech, vision, hearing, or mobility, ask your doctor about rehabilitation treatment. There are several types of rehabilitation specialists who can help you improve your motor functions. Rehabilitation specialists can also show you how you can modify your home or car to help you move around more easily.
Join a Support Group
There are several types of support groups where you can share your experiences with people who are going through similar situations. You can join a group on your own or a group that includes your family. You can also join an in-person support group or an online group.
Join a Clinical Trial
Almost every drug or therapy that exists today has been previously tested in a clinical trial. The goal of clinical trials is to find new treatments that are safe and effective and have fewer side effects. Hispanic people are still underrepresented in clinical trials. If you’re interested in taking part in a study, ask your doctor to recommend a clinical trial that’s right for you.
Ask for Financial Aid
There are several organizations and programs that offer financial aid to fight MS. Look for non-profit organizations that support MS treatments and research. The National Multiple Sclerosis Society also has a list of available programs that could help you.
The National Multiple Sclerosis Society also offers the following resources:
- A list of benefits
- A list of free drug programs for people who don’t have health insurance
- A list of drug programs for people with health insurance
- Information about getting coverage and getting health care without insurance
- Information on how to apply for Social Security disability benefits
Show Sources
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SOURCES:
Accelerated Cure Project for Multiple Sclerosis: “Minority Engagement in MS Research Community Partner Toolkit.”
La Fundació Esclerosi Múltiple: “¿Cómo impacta la esclerosis múltiple en la salud mental? [How does multiple sclerosis impact mental health?]”
Fundación de Esclerosis Múltiple de PR: “Programa de Educación / Educational Programs.”
Fundación ONCE: “Salud Mental y Esclerosis Múltiple [Mental Health and Multiple Sclerosis] .”
MedlinePlus: “Multiple sclerosis.”
National Alliance on Mental Illness (NAMI): “NAMI and Mental Health in the Latinx/Hispanic Community.”
National Society of Multiple Sclerosis: “Speaking the language of MS,” “Financial Resources,” “Rehabilitation,” “Participate in a Clinical Trial.”
