How do you cope with something that you can’t see? For many of us, dealing with the invisible symptoms of MS can be extremely challenging. Issues with fatigue, depression, cognition, intimacy and self-esteem often go undiagnosed, under treated and misunderstood.
We ourselves may have difficulty defining and describing what we experience to others and this can lead to feelings of loneliness and isolation. Friends and loved ones try to understand, yet we may still feel that they simply “don’t get ” what we are going through on a day-to-day basis.
Ultimately it is up to us to learn how to describe the changes we experience and to ask for what we need to feel supported by those around us. When we find the words to describe what our fatigue “looks” like and how it impacts us during different times of the day, for instance, we can share this information with others and teach them how to flow with our limitations and strengths. For example, if you are more alert in the morning hours, ask that important discussions be done over breakfast rather than during dinner.
If you notice that you experience cognitive problems when there is background noise from the TV, mention this to your family members or friends and ask that it be turned off when you are talking. Don’t wait until you get frustrated or angry to make this request.
Be sure to share symptoms with your neurologist as well. Fatigue, depression, insomnia, sexual dysfunction and even cognitive issues can all be managed with medications and other interventions, but your medical team must be made aware of these problems and you are the best one to explain how your life is being impacted by these common MS problems.
Take advantage of various experts such as speech, cognitive, physical, occupational, and psychotherapists. These specialists can work with you to create strategies to help you minimize the impact MS has on your life.
Finally, reach out to other MS patients through various support groups. Talking to others with the disease can validate your own experience and help you feel less alone.