Living with MS can be a very lonely place. It's wonderful to have the support of your team around you, but the road can feel like it's your battle to win every day. There may be days you wish to yourself “if only I could really describe what it feels like." Describing your MS can be particularly frustrating when you experience symptoms that are invisible to others.
Our MS Nurses spend their days supporting and talking to people about their MS symptoms, so we asked them to share their insights into how to communicate and manage these symptoms. They told us that the symptoms that tend to be hardest to describe are often the symptoms that fluctuate each day, making it even harder to capture how you are feeling on the actual day. In their experience, the top three of these symptoms are cognitive changes, fatigue and nerve pain.
The MS nurses explained four techniques they most used to help describe symptoms. These are:
The power of pictures. We are all visual creatures and images are a great way of explaining tough concepts and problems like invisible symptoms. Images can make a story personal and help feel involved and connected by sparking emotional responses. Capturing an image to go with your symptoms may help you and others to understand where you are at. It may be helpful for you to begin the process by just simply drawing how you feel. You don’t have to be a brilliant artist, sometimes we feel like enormous splashes of happy yellow, other times a messy mass of red and grey. Just grab the pencils and start letting it out.
Using analogies. Analogies can be another good tool at helping people understand, process, and emotionally connect. Analogies can assist by grounding concepts into the familiar for people. How many times have we heard people say it’s ‘worse (or better) than childbirth’, or it ‘feels like I have just run a marathon’.
Using the scientific or factual definition. For some people being direct and providing the scientific black and white version can be helpful to assist them in understanding.
Using other people’s words Many resources have been created to help you find the right words and definitions. Google, Wikipedia (and if you haven’t yet heard of it, Chat GPt) all can help. Most of us are smart enough to filter out the inaccurate information and pick and choose from the wording to help cobble together a meaningful explanation for them. Its ok to do this, just do so with your internet information filters on.
Below are a few ways to help your loved ones to better understand the impact of individual symptoms:
Technical definition: Fatigue is a feeling of constant exhaustion, tiredness or weakness. It can be physical, mental, or a combination of both. Not to be mistaken with general sleepiness or physical tiredness, fatigue can happen suddenly and for no specific reason, and can take a long time to subside.
You could also describe fatigue as:
Technical definition: Cognitive dysfunction (otherwise known as brain fog) can include difficulty with planning and problem-solving (executive functioning), concentration and attention, memory, such as recent events, information or tasks, remembering the right word to say (i.e., a word is on the tip of your tongue), processing information, such as instructions, visual and spatial abilities (for example, judging speed, distance and objects around you).
You could also describe cognition changes as:
Technical definition: nerve pain is a common MS symptom that, if left untreated, can seriously affect your physical health and mental wellbeing. Like all MS-related pain, nerve pain can be acute (is usually short-term but can come back), paroxysmal (sudden attacks) or chronic (long-lasting).
Could also describe nerve pain as: