Each person’s experience with asthma is different but many asthmatics commonly experience feelings of social stigma, embarrassment, blame and self-blame.
This idea isn’t news to me but recent events brought the topic fresh into my mind. A few days ago, I had what I like to call an “asthma fail.” That is to say, I failed to judge my environment properly and I failed to take appropriate self-care. (The details: I visited a museum that explicitly stated it did not allow dogs and I went out to lunch with my family without going through my excessive decontamination practices. I only washed my hands and face before changing into freshly laundered clothing when I returned home.) I paid for such reckless neglect with a full-blown asthma attack in the wee hours of the night.
WHAT? Even as I am writing this down now, I am shocked by my rational. It’s not healthy to think this way! Sure, my asthma attack was a consequence of my actions but I certainly do not deserve to suffer.
At the time of my asthma attack, I was embarrassed and furious at myself and my body. I was mad, disconnected from whom I am, physically exhausted and emotionally tapped out. I kept saying “This is not fair!” and referred to “my misbehaving body” in the third person: “You’re lucky it’s not 2050 because I would so leave you behind and move on without you!” It wasn’t a pretty sight and it was hours filled with self-loathing, blame and embarrassment.
On a happier note, I did eventually snap out of it. And it is good to find and restore your humility after feeling so gutted.
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S O C I A L S T I G M A + E M B A R R A S S M E N T
I feel nervous to talk about the psychological effects of allergic asthma as it is a sensitive topic and because I can only speak of my own experiences. I stared this blog partly because I am tired of having to hide the reality of living and coping with asthma and because it is often difficult and embarrassing to talk about it.
Most obviously, my often poor physical state, vulnerability and helplessness are topics embarrassing to discuss. Simple inquisitive statements like “tell me about your attack” and well meaning “I hope you figure your asthma out soon and get well” are conversation starters more loaded than you expect them to be. Misunderstandings, misconceptions, gaps of asthma specific knowledge and the differences between the realities of asthmatics and non-asthmatics can be alienating. Asthma is a serious disease, but few people can truly understand how dangerous it can be. For example, it is easy to underestimate allergic asthma when thinking allergies equals sniffles and itchiness instead of causing life-threatening symptoms that need medical attention.
For some people it is even difficult to believe you’re ill if there is nothing much to be seen. “How does it hurt as much as you say it does…you don’t look too bad?” “Why can’t you do or take something for it and move on with your life?” People who have seen me have an asthma attack or taken off in an ambulance tend to be much more understanding than those who haven’t. Yet, my yearning for inclusion, understanding and sometimes empathy doesn’t mean I am going to have a show-and-tell for everyone. I would like to preserve some of my dignity. Not breathing is a strange pain and sadly, it is more painful than you expect it to be.
In addition, the dependency on medication is embarrassing and sometimes even controversial. Sure, it is off-putting for me to take an inhaler and medication in public or in front of people. However, to my surprise, having to rely on medication this urgently is shocking to most people. It does not help to be criticized for drugs you take in an emergency or drugs necessary to manage asthma. Medication drugs are often harshly criticized for the negative impact they have on the body even though those same drugs are critical to the asthmatics well-being and survival. On the other hand, taking a stand against traditional medicine and drugs is equally controversial. Ultimately, anyone with an opinion might blame you for taking medication or they might blame you if you don’t.
F E E L I N G S O F B L A M E + G U I L T
I just recently started to admit to having allergic asthma (to dogs, easily most people’s favorite animal) to anyone who’ll listen. I am no longer ashamed to speak my mind but it is also not an easy topic to discuss.
Asthma is difficult to discuss because it is a variable condition that affects everyone differently and everyone deals with it differently, too. For this reason, your friends, family, your partner, work colleagues or boss may have a lot of questions or opinions about your asthma prompted by genuine concern, puzzlement or even sheer curiosity. It can be frustrating, humiliating and hurtful when you have to explain yourself. My body and my health are deeply personal to me and it is not something I’d like to discuss with just anyone. It's your choice who you choose to tell and how much detail you want to offer. There is no point to explain your medical history to someone who’s strongly opinionated and pessimistic. However, most people are well-meaning and like to help as best they can; often offering “cures” that worked in their life: their trusted doctor, chiropractor, holistic treatment or special dietary regiment. Explaining myself further and disagreeing to try their suggestions burdens me to think I deserve to suffer because I don’t listen. Did someone just offer me a solution that would make all my allergy and asthma symptoms disappear and I am perversely not taking it?
Apart from explaining my asthma and justifying my coping and treatment mechanisms, I also struggle with a variety of difficult questions on a regular basis. Who is to blame? And what’s the cause (of asthma)? Even speculations on the matter could be tremendously difficult and hurtful (to the asthmatic, relatives and friends).
W H O I S T O B L A M E ?
The asthmatic? The environment? Family and friends? The doctor?
Logically, the blame falls mostly onto the one who’s ill. Caught up in this game of finding blame, this person might then go pointing fingers elsewhere. Admittedly, I tend to snap when I’m caught in my less graceful moments. I understand it’s not beneficial to have an elevator pitch for my asthma with its main point saying “back off,” however; dropping the conversation is often favorable to swallowing ignorance, blame and accusations. These are the things I never say:
“I suppose it’s my fault that (insert hurtful personal incident/resentment here) and now I’m inconvenience everyone by being ill. Sorry to bother you! I suppose you’re right, I just haven’t seen the right doctor yet. The one with the miracle drug that will cure me with the special thing he does. I guess I just haven’t thought more than three minutes about it! … Are you kidding me? I had allergic asthma since childhood and it is not news to me like it is to you…”
My point is none of the blame and accusations help anyone feel better. Proper insight into the reality of an asthmatic might undo the unnecessary psychological burdens that come with asthma. Minimizing the psychological effects is necessary for physical well-being and happy relationships. None of which can be achieved by keeping asthma a secret or with an elevator pitch that pushes people away. Likewise, opening up to anyone with an opinion on asthma can be stressful and frustrating. To the asthmatic I’d say: be kind and tactfully avoid an argument. To the non-asthmatic I’d say: be kind because anyone who is unwell needs forces of healing, instead of alienation, pessimism or blame.
♡ Nina
Disclaimer:
Thank you to everyone who takes the time out to read the things I have to say. I am not an expert or professional! My advice is genuine and based on my own experience as a severely allergic asthmatic. I am hoping my writing can suggest reasonable solutions to anyone that may need it and maybe bring awareness to those interested in the topic.
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