Rheumatic autoimmune disease in particular has a habit of presenting symptoms that are unpredictable. They can sneak up and take you to the ground unexpectedly, and mercilessly. (For some people that is quite literal, not just metaphorical.) I asked some of my friends for input on this because I’ve been mulling the topic over for a few days now, and I wanted to hear perspectives. I am (anonymously) including some excerpts from that conversation here. I hear them echoing my own experiences and frustrations.
The typical patient – anyone with Lupus, RA, Fibromyalgia, Lyme disease, Cushings, MS, Sickle Cell, Dysautonomia, Myofascial Pain, Chronic Fatigue, any Chronic pain… is always dealing with symptoms. The amount, degree, and intensity varies, but we are nearly always symptomatic. With a disease like Lupus, we don’t even have a true remission. We can achieve clinical quiescence but to be totally symptom-free is not really a thing for us. It’s tenuous. These are for the most part “invisible illnesses” and what does show we try to cover for the comfort of others and also ourselves. Who doesn’t want to look decent when they are around other people? That’s considered normal for a healthy person, but when we do it? It is sometimes viewed as deceptive, or worse it can be assumed that when we say that we are ill or feel bad it must be a lie. It’s no different an action than someone that goes to work with a head cold, or attends a meeting with a migraine, only for us it has to be done every single day. Life responsibilities require us all to put on masks at times. For someone chronically ill, we also have to do that in order to have some recreational moments and enjoy time with loved ones. It’s not an attempt to deceive anyone. It’s just as dreary for us as it is for others to always see a frown, or the tiredness. Sometimes what little energy might be saved up for an activity just doesn’t last as long as we’d like it to either. That is more to the point here. It runs out… sometimes so fast, and so unexpectedly. There is no way to predict it or avoid it.
Some of the issues my friends raised that are important to ponder:
When you are young, people will tell you that you are too young to be that sick. Well, it would be nice if life were like that but it is imperfect and so are we. There is no specific age range that we are allotted where we can avoid debilitating and catastrophic health changes. It happens.
Saving up energy for an event or gathering is no guarantee that you will be able to complete the plans. Sometimes you have to cancel before even arriving, sometimes you have to modify your activities, and sometimes you just have to cut the whole thing short. Believe me, we that have to do these things feel bad about it too. It’s hard to not be in some amount of control of this and it takes an emotional as well as a physical toll. When you have young children, it is also impossible to explain to them why it has to be this way. For a parent that can be disheartening.
Even when someone does not say the words, you can see it on their face. “You were fine a minute ago….” The implication is that there is nothing sensible about this sudden shift in demeanor and capability and well, you are right. It is not sensible. It is however very real. The typical autoimmune patient feels extremely betrayed by their own body. It is infuriating. “I can be fine one minute and feel like a truck hit me the next!” – that sizes it up well for most of us. Even family and friends that have witnessed this as a pattern can have a difficult time accepting the reality of it, and for those that knew their parent, sibling, child, or spouse as someone that was healthy before this illness it is even more confusing. They want the “old you” back. We want ourselves back too. We face however a new reality with changes and adaptations that have to be made. Those encompass the whole family, not just the person that is ill.
To the onlooker, it seems reasonable to offer the most basic solutions. Would you like an aspirin/Tylenol/advil? Would you like to take a nap? Why don’t you rest your eyes a bit? Would you like a cool glass of water? All of those things are certainly reasonable, and socially correct, and even nice. The problem is that they aren’t effective for our condition. When that dime turns, and our bodies start to revolt, we can go from 60 to 0 (I reversed the numbers on what someone added because it’s a stop not a start) and there is nothing anyone can do to stop the process that is in motion. This is where it gets sticky. When people find out that we have such serious issues and it can intrude on life so unexpectedly, they sometimes stop wanting to invite us to things. I believe they somehow think that it is the considerate thing to do. I posted something about this at least a year ago and it was probably the most shared FB post I’ve ever put out there. It went EVERYWHERE. I was grieving and emotional when I typed it… and feeling completely rejected and forgotten. For the love of all that is good and holy, do not stop inviting us to things. Do not think that we are too fragile to make our own decisions, PLEASE. I certainly think that I deserve to still feel welcome, missed, wanted, and included.. but I also need the leeway to be able to decline without feeling like a heel for doing so. That is NO MATTER HOW MANY TIMES I HAVE TO DECLINE. Right? Sometimes I have to modify my plans, even if I show up. That too has to be accepted for what it is. I do not know if people feel insulted, or what it is, but none of us are trying to be impolite. It’s just that placing health first is the most important priority. Don’t take it personally.
I must look crazy to some people. Yes, I am ill. Yes, it is serious. Yes, I am technically disabled even though I have not applied for disability. It’s not necessary at this point in my life to do that but no, I genuinely cannot hold a job. I do indeed go hiking and camping, but as my recent videos titled “The Price We Pay” are showing, it comes with a backlash. I have talked about why I can’t be reliable for an employer in other blog entries, so I won’t dwell on it too much here. Suffice it to say that I can change MY schedule without consulting anyone. Employers don’t really like it when you do that to them. If I have to stop cold and lie down, I can do that when I’m on my own time. Sometimes it’s just that serious too. Even if I am out camping. Everything stops wherever I am. That’s on me and no one else.
Speaking for myself, I can be moving just fine through part of the day and then suddenly some nerve is pinched or malfunctioning without knowing why. Then I can barely walk, or maybe can’t put weight on one leg. My autonomic systems sometimes go haywire. Unexpectedly I end up in a cold sweat and everything hurts. At times I go from amped up to go somewhere to realizing fearfully it would be a bad idea and I have to slow down and reconsider. This doesn’t happen all day, every day… but it’s not uncommon.
We must all look crazy to healthy people. That is the conclusion I am drawing. It has been programmed into this society that “sick” looks like someone that has been on a heavy round of chemo, lost a ton of weight, and their hair, or can barely walk. All of that happens sometimes to Lupus patients, but not always. (Some of us end up going through chemo, by the way. It’s not just for cancer.) Planned vacations with family can be among the hardest of situations. When you put down money and arrange schedules of several adults, or around schooling as well as jobs, and have to coordinate everyone, one little change can seem like a disaster. The chronically ill individual is used to making adaptations after living with it for a while, but our families are sometimes slower to adjust. When it is something that has been anticipated and then seems to have a damper on it, for others it is upsetting because they are confused and disappointed. When you are the one living with the illness, you have to learn to deal with disappointment and confusion and process the feelings in as healthy a manner as you possibly can – and that is not an easy task no matter how long you have been doing it. None of us know how to teach our loved ones how to do it. It is something that they have to figure out on their own as well.
I may not be able to offer any genius solutions. I think however that it is important for all of us to recognize that most of us are facing the same social challenges along with our physical ones. I have watched some of my friends finally make progress in communicating better with family members, and that is tremendous. I wish that success for all of us. As one friend pointed out though, sometimes we also have to separate ourselves from people. If they are too angry, and the relationship is toxic, it does no one any good. Hopefully that doesn’t have to happen too often. To those that have a struggling loved one, I would say this… Don’t cut yourself off. Losing the connection to someone that you care for leaves you both vulnerable to permanent regrets. We are not promised our next breath. Embrace those that you love and the entire experience of having them in your life while you are able. It will not be perfect. It will not always be pretty. It is however a genuine treasure that is truly worth an investment of self.