Receiving a diagnosis of multiple sclerosis (MS) can be scary and confusing, and can take a very long time after the first signs of symptoms. Often, people do not receive definitive diagnoses of MS for years after the onset of symptoms. Despite this, many individuals who have been diagnosed with MS do not know very much about the disease. However, once you have been diagnosed with MS or informed that MS may be the cause of your symptoms, improving your understanding of this disease should be you next step. Below is a list of do’s and don’ts you should follow if you receive an MS diagnosis.
- educate yourself
- surround yourself with people who care about you
- build a strong medical support team
- talk about your MS with people you trust
- be proactive
- forget to maintain your routine
- isolate yourself
- skip health care appointments
- skip taking your medication
- continue talking with people who are not supportive or who tell you MS horror stories
Often, people diagnosed with MS are hesitant to learn more about living with this disease, and many people who are diagnosed with MS are afraid, turned off by, or avoidant of MS education. Fear, a common and very normal response to an MS diagnosis, can be a major detriment to successfully coping with this illness. It is important to know what symptoms to watch out for and know that not everyone living with MS experiences every symptom. Ask your physician or psychologist for information and be careful because there is a lot of misinformation out there about MS. Make sure you get your education from a source you can trust, either places recommended by your doctor or a place like the National MS Society – they will provide you with a free educational packet about MS.
Anytime you receive potentially life-changing information, it is easy to want to be by yourself all the time. As humans, one of our natural responses to difficulty is to isolate ourselves, especially during an illness. This time alone can be important in order to take stock of your new life situation, but you need to be careful, because isolating yourself can really hurt you in the long run. The more you push people away, the less they may be there for you when you need them later on. Try to balance that desire to push everyone away with surrounding yourself with those who care. Be sure to make some time for yourself, but also find time to be others and to let them help you when you need it.
Find a good neurologist, seek out a therapist and talk to MS support groups. Your neurologist should be someone who you feel you can trust, who is well-versed in the current treatments and scientific literature about MS and if possible, someone who specializes in this disease. Similarly, your therapist should be someone you feel comfortable opening up to and relying on, and ideally someone who has experience dealing with MS or with chronic health care issues. These people will be able to help you to identify and develop the skills and treatment plan you will need to successfully live with MS. They will also be able to refer you other specialists, such as physical therapists, social workers, and psychiatrists, as well as to support groups to help you cope with this illness.
Your feelings are real. This is a scary disease to live with, but importantly, it is a disease you live with rather than die from tomorrow. We tend to project our thoughts or fears into the future and imagine the scariest possible scenario, and most often, things turn out much better than we imagined they would. Moreover, when we focus on our worst fears, we end up fearful, depressed, constantly on alert, or even numb to what is happening in the moment and unable to enjoy life’s little pleasures. So find a therapist, a support group, some good friends or an online chat room where you can speak with others about your situation. Choose these people carefully and be mindful that your supporters understand your situation and will listen to and care about you, rather than people who will make you feel worse or who scare you.
If you have a symptom that keeps popping up, take action. For example, many people with MS have falls, often a lot of them. If you are falling a lot, speak to your doctor, physical therapist or another professional about this. They may be able to help you by changing your medication, therapy, or daily routines to help to combat the problem. And if they cannot help you, they can probably point you to someone who can. Most importantly, if you avoid talking about your problems, you will not get the help you need and you can really cause more problems for yourself later on.
Take time for yourself to relax, to enjoy quiet moments, and be careful about overtaxing yourself. You may not feel it all the time but MS can take a toll on your body and mind, so you may not be able to do as much as you have in the past. Maintaining a healthy lifestyle through regular diet, exercise, and sleep (all as instructed by your healthcare team) is an important part of your treatment. Try to remain focused on staying calm, reducing stressors, and relaxing. Yoga is a great way to do this and can help you maintain strength, balance, and coordination.
Too often, MS patients choose to stay home instead of going out because of the difficulty of getting around due to the physical limitations of the disease. People with MS also report increased fatigue and muscle fatigue when going out in extreme heat and stay home in hot weather. Although you need to be careful not to overdo it, it is important to get out sometimes and be with other people. Many communities throughout the US provide transportation services for the elderly and physically handicapped and there are lots of programs in communities begging for participants. Go out! Don’t be alone. If you do need to stay at home, connect with others who are homebound online, through chat rooms, or live video chats. There are a number of programs around the country that enable this type of interaction. So even on a day when it is too hot, try to connect online or invite a friend over.
It is critical that you attend your regular neurologist appointments so you can monitor your disease and discuss issues such as the onset of new symptoms or changing a medication that is not working well. If you have a therapist or a support be sure to regularly attend those sessions as well, because they will help you cope with stress or depression or other hindrances that are getting in your way of living a fuller life. Your neurologist, therapist, and other members of your health care team can be a wealth of information and can also connect you with other specialists who can help you in your area.
For example, perhaps you are having difficulty paying your rent while relying only on your disability subsidies. Your doctors will not hand you a check for the money you need but might know of a social worker who specializes in helping individuals with disabilities who have financial problems. Your specialists often network with other specialists in the area to try and get you the best care possible. There are a lot people out there who care and who want to and know how to help you, so if you need help just keep asking for it and do not to give up.
Being inconsistent with your meds or skipping them altogether can really harm you over time. For example, skipping your medication may cause cognitive chances you may not notice immediately, such as a delay in your brain’s ability to process information, but these changes can significantly impact your health and quality of life in the long run. Some of the medications used to treat MS involve needles, and I know that needles are really, really scary for a lot of people. If you have an aversion to needles or difficulties with any of your medication, talk to your doctor about taking a different medication for your MS.
We all have heard of someone who has suffered a great tragedy, but that does not mean it is common or that it will happen to you. If your friends and family cannot be supportive of you in the way that you need, or are frightening you with horror stories, you need to tell them that discussing your health is off-limits until they can learn to speak to you about it in a respectful way. You also need to find other people who understand and support your situation.
However, try to be patient with people mean well but who don’t know much about MS. As we have discussed here, this illness can be complicated and confusing, so take the time to explain it to them as needed. Although many people have heard of MS or know someone who lives with this disease, they don’t understand what it is like to live with this illness. People also tend to generalize the MS symptoms they have heard about to everyone who has MS. They may think that because their great aunt Phyllis has problems with vision and depression, you are also struggling with those issues. You need to explain to them that not everyone living with this illness displays all of the same symptoms all of the time and that while Aunt Phyllis has problems with her vision and depression, you are have problems with extreme fatigue and with your balance. You never know, someone might even thank you for teaching them about something new.
Getting a new MS diagnosis can be frightening but don’t let it take over your life. Educate yourself. Talk to your doctors and other healthcare providers and ask them to help you find other resources and professionals who can help. Living with MS can be scary and difficult, but by learning about your disease and asking for help when you need it, you will be able to make your life so much more fulfilling.