Mental Health Matters: The burden of invisible health conditions

There are some changes we make in our lives that are readily visible to anyone who looks at us. For instance, getting your hair colored is noticeable to anyone who knows you. If we lose enough weight, that too will be obvious to most of your family and friends. You do not have to announce these kinds of changes, because for those who are observant enough, it will be something that speaks for itself. 

There are other changes in life that are not so obvious. When we graduate from high school or college, we do not walk around with a sign that states our recent accomplishments. Out of our own excitement, we are likely going to share these milestones and markers of development with others.

This is true when it comes to our health as well. Several years ago, I suffered what is called a Jones Fracture. I broke the fifth metatarsal in my right foot. I was out on my morning walk, about a half mile from my house. When I took the next step, it felt like an electrical shock had gone through my foot except the pain did not go away. There was no mistaking what had just happened. I just did not know the extent of the damage until I had driven myself and then hobbled into the same day orthopedic practice in my community.

The assessment stopped me in my tracks, literally and figuratively. I needed to stay off my foot until I could have the surgery, scheduled about two weeks after the injury. Afterward I was to remain non-weight bearing for another 12 weeks. All together, I was looking at fourteen weeks without being able to put weight on that foot. A little over a quarter of a year, no weight bearing on my right foot. I remember it took me a while to wrap my mind around what that would mean. Could I use crutches? Well, yes, I could. Except that I was so unsteady on crutches that I risked falling and breaking something else. As it turns out, you must be somewhere around 14 years old to be licensed to safely participate in crutch racing. They do not issue these licenses to 62 year olds. And yes, I would see some of these lucky young souls every time I went in for a follow-up appointment as they raced past me in the parking lot. 

I ended up in a wheelchair for the first six or seven weeks and then progressed to a knee scooter. There was no hiding that I had sustained an injury. You could see me a block away and identify that I had some sort of impairing health condition. Similarly, when I had cancer, after enough chemo and radiation treatments, it is clear for someone to tell I was  not quite myself. In my case, I looked pale, drained and had the energy to crawl to the bathroom. But walking there was more than I could muster some days.

There are other physical ailments that are not so obvious. Autoimmune conditions, fibromyalgia and chronic fatigue syndrome are all conditions that do not appear so readily from the outside. My daughter lives with Ehlers Danlos Syndrome, a connective tissue condition. Essentially it means that her connective tissue such as her cartilage and ligaments are far too “stretchy.”  Joints fall out of place. That means there is much more wear and tear on the joint. Scar tissue builds up. Muscles become over worked as they try to compensate for what the joint cannot do. One kind of pain leads to several different kinds of pain. It can debilitating, except no one on the outside can tell that it is there. It isn’t something she makes happen. Her DNA is simply missing some information that would prevent that from happening. 

The burden of these conditions can lead to surprising reactions from those around us. Others cannot understand what we are living with and therefore expect us to act and live as if everything is “fine.” When those expectations are not met, there can be some kind of reaction. A dear friend of mine who lives with an invisible condition has a handicap parking permit that hangs on her rearview mirror. She has had times where someone will yell at her as she exits her vehicle because they cannot see what it is that handicaps her.

Typically, what happens when others can tell that you are dealing with a health issue or any kind of obvious poor luck that has befallen you, is that people feel and express empathy for you. Whether you want it or not, they will offer to give you rides or offer to go to the grocery store for you. They may organize meal trains. You will get casseroles. You know, those dishes you take to potlucks at work or church. Tator tot casseroles. Chicken and rice dishes. Those Jell-O dishes euphemistically called “salads” with three different colored layers mixed with carrots and nuts. Cookies. Cakes. You may need extra room in your freezer to store them because you have too many to eat at once.

These things do not happen when you carry an invisible condition. You can appear to be perfectly healthy and well. And yet, your health keeps you from being able to live a life others take for granted. Mental health conditions are very much like that. In mental health, we call our conditions the “no casserole” conditions. People cannot tell from just looking at you that you are in your third month of very deep depression, or that it takes all of your energy just to deal with the high anxiety you carry with you every day, or that you live with obsessive suicidal ideation every day. Perhaps you cannot focus on anything and yet you use every ounce of your perseverance to make it look like you have it all together. Between the condition itself, and the energy it takes to mask it, you have no energy at all.

What does one do when this is what they live with? The difficult part of this is that we must take on what I am about to share with you when we are already depleted of our internal resources. But there are some strategies that are useful. First and foremost, we need validation and understanding from others. You, me or anyone facing these circumstances must seek support from friends, family, support groups or our bible study groups at our places of worship. If we do not share our situation with others, there is no way that they can guess. It is also helpful to share specific suggestions that would be helpful as they support you. “I need you to just listen sometimes. I don’t need advice, but rather a supportive and carrying conversation where you only need to listen.”

Secondly, we need to practice self-advocacy. What that actually means varies from one situation to another. In medical settings, we must provide clear and detailed accounts of our symptoms. When asked what your sleep is like, it is most helpful to describe details. I have a hard time falling asleep. I have a hard time staying asleep. I wake up and cannot get back to sleep. I am restless all night long.  We are the only ones who have the lived experience of our situation. Others cannot guess. 

We may be out with friends for dinner. Afterwards the group decides to go see a movie. We have every right to say, “I cannot join you. I just need to rest and take care of myself. I hope you all enjoy the show!” Our outings do not have to be an “all or nothing” experience. Perhaps we can participate in part of the evening but then need to go home. When we are suffering from depression, we may need to ask for a raincheck. We are too tired after working a whole day and have no reserves to go out again on the same day. The short story here is that we are the only ones who can set those boundaries or voice our needs. No one else can possibly know what we are living with unless we tell them.

We can also develop a toolbox of coping strategies. This will look different depending on what our invisible condition looks like. Perhaps we need to pace ourselves through a strenuous activity. We just cannot handle going to hear our favorite author. We can walk part of the way but need to turn back earlier than the others. Practicing mindfulness can be a very helpful in sorting out what it is that we need. Seeking therapy can also be very helpful as we come to grips with our health.

For those of us who are able, we can provide education and awareness about these kinds of conditions. This may mean we need to educate ourselves first. Others are never going to understand what we experience if we do not make the effort to give them the knowledge to be able to understand. They cannot know until they know, as we say in the National Alliance for Mental Health. If we want others to consider our needs, we absolutely must be direct and clear as we talk about our situations.

Finally, we can practice being flexible with ourselves. Plans can be changed. We can rearrange our day or week so that we do not have to overextend ourselves. If those around us cannot flex with us, we can clearly and confidently say, “I would love to join you at a different time when I am feeling better.” If we do not practice flexibility with ourselves, it is hard to expect others to do so. When we pretend that all is well, others are going to follow our lead.

If you only have the energy to focus on one of the above strategies, my recommendation is that you work on the first. Seek support. We were not wired by our Creator to do this life alone. Most people would be very understanding if we let them in on our struggles. Others have the gift of caring which they cannot exercise if they do not know we are in need. We are communal creatures, and the isolation many feel from these conditions is at times as difficult as the condition itself. It does not have to be this way.

Have questions you’d like to ask Shirley? Message her at oasistherapyservices@gmail.com.