Supporting Those Who Support Us in Life With Chronic Illness

If you live with a chronic health condition, you know how challenging and frustrating it can be to navigate life. For example, how many times have you had to say “no” to your children’s request to play outside during an attack? How about canceling coffee or tea time with friends or even denying a client of your service because you have no idea how you would feel the day of the presentation? These things can play havoc on one’s attitude and create bitterness. Sometimes we sulk and keep to ourselves, thinking no one understands what we go through. We sometimes get angry at the people around us, like our support system, forgetting that they silently share the frustration and challenges we experience.

Our support systems, such as our spouse, children, and parents, also live with our symptoms, frustrations, and daily challenges. Though they may not feel the excruciating physical pain or the debilitating symptoms we get, they, too, can get exasperated and overwhelmed whenever we feel unwell. I find this to be true, especially when they feel powerless in attempting to ease our pain. Sometimes, it is natural for us to focus on our pain and limitations; however, we sometimes forget that we are not alone in our battles.

Years ago, I was diagnosed with paroxysmal nonkinesigenic dyskinesia or PNKD -– a subtype of dystonia. The first few times I’ve experienced my neurologist’s dystonic storm, I was constantly overwhelmed and infuriated. Parts of my body would twist, my muscles would spasm, and I would end up crying in pain. The random occurrence of my symptoms made it very challenging for me physically and mentally. In addition, I was confused why it was happening to me. My family would try to help me feel better, but my condition had a mind of its own, and at first, there was nothing my family could do to help but be there for me until my symptoms subsided.

On top of dystonia, I also live with a rare form of migraine called complex/hemiplegic migraine, which is also debilitating. The unpredictability of these two conditions made it very challenging to navigate life. As a result, my days are full of ups and downs, like living on a roller coaster which can test anyone’s patience. Just like being on a rollercoaster ride, one moment you’re having fun, trying to reach the clouds above you, then suddenly you drop, feeling sick to your stomach. Living with a chronic health condition is the same; one day, you feel great, full of energy, able to plan, spend time with family, and simply go to work. However, the next day, you’re stuck in bed, unable to move, in pain, missing appointments, disappointing clients and family.

There were days when I could not help but feel sorry for myself, but my family was always ready to encourage me, yet there were days when my frustrations would get directed at them. I would find myself snapping at them, saying things like, “You will never understand how I feel. How could you, you don’t feel my pain!” I remember one time, in the early stages of my dystonia, whenever I would have an attack, I would sense what I then perceived as my husband’s anger towards me. I would say to him, “It’s not my fault I’m in pain! Stop being angry at me!” My husband’s reaction to my flares made me feel like I was an inconvenience to him. I thought to myself, “How dare he?”

I’m the one in pain, living an unpredictable rollercoaster life; how could he be the one angry? Later he made me understand that his reaction stemmed from being unable to express how he felt whenever he saw me struggling. Yes, he was furious; he was frustrated, but not at me. He felt helpless watching me suffer. “I couldn’t help you. I couldn’t make you feel better. I wanted to take your pain away,” he explained. Of course, my husband cared. What was I thinking? He wanted to help me, but he didn’t know how and I didn’t try to understand. My husband chose not to share his frustration with me because he didn’t want to add to my problems. We had a misunderstanding. Many of our support systems are this way. They see that we are struggling; therefore, they choose to keep their feelings hidden. However, our support systems must have their outlets, too.

Sometimes we forget the people who take care of us have a life to live. They have things they have to do, deadlines to meet, and business to run, but still, they find time to tend to our needs. My mother was the same way. When she was still working, my mother had things she had to take care of, yet; she would find time to come by my house to clean and cook some of my favorite comfort food. She knew my internal struggles; my guilt for not fulfilling my duties; therefore, she would take care of some of my responsibilities as a mother and a homemaker. She stepped up because she could feel my pain internally. The burden on our support system can be heavy. On top of taking care of their responsibilities, sometimes they also have to fulfill ours, which can be stressful.

Many times, we fail to communicate with our support system, assuming that we all understand each other. However, this could be far from the truth. Communication between us and our support system is essential; it is vital in our journey. Communication allows us to know where each of us stands. Are we tired? Do we need to pause? Do we need to talk? Our support system could physically see our pain, but sometimes it’s beneficial to speak with them, let them know how we feel inside, and share our feelings. At the same time, it can also allow us to listen to theirs. Are they tired? Do they need to talk? Do they need a break? We also need to be mindful of their physical, mental, and emotional well-being. As people with a chronic illness, we might not physically assist our support system, but we can certainly offer our understanding and patience.

Because my husband made sure he took care of my needs first, he kept his struggles in and eventually got sick himself. Knowing that my husband was stressed about my illness, ultimately affecting his health, I felt awful. We can avoid these situations by making sure we hear each other out. It took some reflection, understanding, empathy, and compassion to realize that I was not traveling alone in this chronic illness journey. I realized that my support system was with me, experiencing the same roller coaster I was riding. I finally saw my husband, children, and parents and understood their need to be heard and understood.

In conclusion, it is imperative that we see our support system, recognize and acknowledge that they, too, are living with our conditions. It is easy for us who physically feel the pain to get sidetracked and take our support systems for granted. We forget that they have feelings and need to care for their well-being. Whoever is part of our support system, our spouse, our parents, or our children, they must take care of themselves, physically and mentally, just like we take care of ourselves as chronic illness warriors. They, too, need to pause, take a deep breath, and rest. They, too, need to be seen and heard. Let’s remind ourselves that we are not alone in our journey. It is stressful for our loved ones to see us struggle; therefore, it could be stressful for their health, too. We must remember that we are all in this together. We must take care of each other and hold hands on this roller coaster ride.