The “Intangibles” of Rheumatoid Arthritis & Chronic Illness by Ashley Boynes-Shuck

Living with any illness is a challenge; but having an “invisible” illness is especially difficult. How can you make people understand your condition when  your symptoms and your disabilities are often hidden?

Yesterday, I had a rare weak moment where I was very much struggling to stay positive. Since we’re all human and entitled to really FEEL our feelings, I let myself feel sad for a bit. As I processed my feelings, I realized that in addition to my pain, discomfort, fatigue, and sickness, that there are other “intangible” things and feelings that go along with these kinds of conditions. (i.e. rheumatic diseases, chronic pain conditions, autoimmune disorders, and other invisible illnesses.)

Thus, to help make “the normals” (healthy people in our lives) understand our feelings, I have decided to compile a list of these intangible things that “we” experience, that the general public may not understand or be able to otherwise comprehend.

1) We  literally can be fine, normal, and healthy one day, and barely able to move or function the next. It does not mean that we are faking, or that we pick and choose how we feel on any given day. It isn’t something that we can turn on and off. In fact, we could be fine one HOUR and doing horribly the next. That is the nature of these conditions.

2) We worry what you think of us. We feel bad when we cannot help with chores or we cannot partake in certain physical activities. We fear that you don’t believe us, or worry that you think we exaggerate. We are bothered by the prejudices and stereotypes that come along with having any type of disease, handicap, or disability. We worry that you think we are less valuable members of society than others are. We feel guilty because we think that you think we sometimes don’t “measure up” and we may feel like a burden. So, yes, we worry what the world thinks about us and our ailments.

3) We are torn because we wish people could understand what we are feeling….but on the other hand would NEVER wish it upon anyone or want to have anyone else go through it. Likewise, we are glad when people can relate to us…but saddened that they are dealing with this stuff, too.

4) We sometimes are overcome by sadness, fear, and/or frustration when the realization hits us that “this is forever.”  Sure, some of these conditions can and may go into remission….but no matter what anyone (or any website/product!) tells you, there is no cure. For those of us who are young, it is sometimes upsetting to realize that this is our life….for the rest of our lives!

5) We get annoyed by people insinuating that it is all in our heads or that we can change the way we feel by “a positive attitude.” Trust me – you all know that I am a HUGE advocate of having a positive attitude and some of you even comment upon my strength and positivity. HOWEVER….if we COULD change how we feel based on optimism, wouldn’t I be cured? Wouldn’t so many of us  with happy dispositions be cured? If it were all in my head, couldn’t I very easily get rid of it? Why wouldn’t I? Do you think I and others in my same boat WANT to live a life of sickness, pain, and exhaustion instead of a normal, healthy life? Why wouldn’t we want that for ourselves? It is silly to think otherwise.

6) We don’t want people to pity us. Well, most of us don’t. However, we do want people to understand and be aware of the seriousness of these conditions. They aren’t just “aches and pains.”

7) We live with frustration. Frustration at not being able to open a jar of pickles, frustration at having to cancel plans with friends, frustration at our health affecting our careers, frustration that the general public does not understand, frustration that we spend so much money on health-related things, etc. We are frustrated that we can’t contribute more at home, frustrated that we have to worry if we will be well enough to enjoy special occasions, trips, or things that we like to do. We get frustrated when doctors do not have answers for us, when medications or treatments fail  us or make us worse. We get frustrated when we know something is wrong and no one will listen and it takes months or years for a diagnosis. We get frustrated when people suggest that we are seeking attention or faking, or when people undermine what we are going through. We get frustrated that there isn’t a cure, that healthy people take their health for granted, and that we, on some days, struggle with the simplest daily activities.

8 ) That being said, we aren’t all depressed. There is nothing wrong with that, but it is a label that doesn’t apply to all of us, so please do not lump us all together.

9) We have fear. Fear that we won’t get better, or fear that we will get worse. Fear of the unknown, of unforeseen complications and risks due to our conditions, and fear that our support systems will someday abandon us.

10) The biggest intangible about living with these conditions is that we do the best we can do. Again, this doesn’t apply to everyone. Some people do accept defeat and live a miserable life – this is just a fact. However, most of us want to live as full a life as possible and do the best with what we’ve got. So please don’t forget about us! While we want you to educate yourself on our conditions and be aware of our struggles, we don’t want you to exclude us because of them. We are still your friends, your family, your loved ones, your co-workers, and valuable members of society — our illness doesn’t change who we are.

Stay well,

Ashley Boynes-Shuck

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