The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

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8 Comments

  1. I wonder if the reason some people might wish to have a debilitating physical condtion is the same as my wish – no longer current but for what it’s worth, my thinking went like this.

    I am currently diagnosed bipolar. For many the years my depression, anxiety, dissociation was not recognised as part of bipolar (a diagnosis I am not 100% certain of); I had little support or understanding; and the stigma of having an ‘invisible’ and stigmatised condition all led me to wish I had a more obvious and understood physical condition. Of course, I had no idea what that was really like.

    And I share your frustration with the people who claim prayer is the only answer.

  2. I know some of the people who want a diagnosis of a disease that is not hidden, probably most, are in the category that you stated. I actually had a specific person in mind however. This person spent hours combing through the SSI database trying to find diseases she could get away with having, so that she could get disability. She felt that she should not have to work, and that people with these diseases that were less apparent were all fakers.

    I was diagnosed with several of the diseases that she found and had said she wanted. Honestly she is likely a rare breed of person, and I hope the breed only gets rarer.

    I hope that you have more support now, and I wish you all the best in the world. I know living with any disorder that effects the way you think is not just debilitating but is emotionally challenging.

  3. I hate prayer. And I hate depression. It’s been a long time since I said “left foot, right foot” to myself to get my feet to walk out of bed in the morning, but I never went to a shrink. I didn’t want to be medicated into feeling better about my crappy life. I wanted to not have a crappy life anymore. The shrink wasn’t going to put me in a healthy relationship, or give me friends, or pay my rent. I didn’t want pills, I wanted to not feel like trash anymore.

    If you praying can fix it, then you not praying keeps it broken. “You just need to pray” is euphemism for this “This is all your fault. You wouldn’t be this way if you were faithing right.” Yeah, blame the victim for failing yet again, and make the object of failure something completely without an objective measure of success.

    “You just need to pray through it” is a punch in the face.

  4. Kateryna – thanks. I have got more support and understanding now. I wonder about people like the individual you witnessed going through all those conditions. I do think people like that are rare, though from the way I hear many people talk about people who get benefits/welfare/services for having a disability or medical condition, there is a perception we are all like that.

    Truthwalker, you have put into words what I was feeling about prayer as an answer to any kind of problem. Though agnostic, I can understand praying for the strength and stamina to cope with life, but I do feel many people mean “it’s all your fault, you haven’t prayed enough”.

    A bit like cognitive-behavioural therapy (CBT) = though it can be useful, the underlying assumption seems to be “you’ve been thinking all wrong” and the external conditions which lead/trigger/worsen depression etc are ignored. It’s not that you like in a crap situation, it’s that “you’re thinking about it all wrong”.

    Having said that, it can be helpful given the right therapist. I have found medication and psychotherapy (of various kinds) helpful in giving me the strength and stamina and self-belief (or reclaiming them) to not only deal with the issues like poor relationships, poor economic and housing issues, but also in doing my bit in tackling the bigger things in life (sexism, racism, stigma and discrimination).

    Though there’s always more to do!

  5. Yeah, I didn’t mean to say no one should ever take medication or see therapists. I often encourage people who come to me for advice to do so. For me personally, thought, it really was a lousy environment. Ending those relationships, and not needing support from those people helped me more than anything else I’ve ever done. Odd as this sounds, the one thing I have found that helps more than anything else is making love to someone I care about. Being in healthy, normal relationship took a lot of the edge off.

    As far as fighting all the -isms. Well, just recently I gave up on trying to make the system better. I’m just going to fight the good fight with individual bits of kindness and stridency. We’ll see if that works for me or not.

  6. Fighting the isms – well, I’ve been through a quiet period, but not feeling I need to do something – nothing major – but educating myself through blogs like this one (thanks Katyrena!) and discussing things.

    Yesterday I was out leafleting against a fascist party called the British National Party who are standing in the European elections on 4 June (known for their racism, but they also think rape isn’t a crime!). I did an hour, and am physically exhausted today. But it did me good in other ways.

    I like your policy of “individual bits of kindness and stridency”- don’t underestimate their power.

  7. I just want you all to know I have read all of your comments, and I will respond eventually. I appreciate each and every one of you coming here and having this conversation.

  8. Truthwalker:

    You pegged why I began to explore religion before I was eight years old. I couldn’t comprehend a God that decided everything you did was bad. How can people function and find JOY in life if everything is a sin? I look at the current Crisis that the catholic Church faces and it is hard to not find validation in my personal choices with their issues.

    If everything is wrong then why bother trying to be right? You definately said it perfectly. I really have trouble with the concept that tragedy brings you closer to God. The idea that an omnipotent being would want people to suffer, as we do, makes no sense to me.

    I didn’t take your words as no one should take medicine or never see a therapist. I took it as, be a conscious advocate for proper treatment and only necessary medications. It is also the voice of experience that pills aren’t for everyone.

    If you want proof of that, try giving an autistic child ritalin. They go insane. I know, first hand how that feels so please only take the information from this and don’t actually DO it. (Disclaimer for any mad scientists).

    The best way to fight Isms is also fighting with kindness and stridency. Not everyone can handle taking n the bigger chunks, and those bigger chunks require practiced kindness. It is hard to be kind when people are abusing you and denying you the right to live. Starting small is the best practice.

    Anne:

    I pray that they are rare. I hope they are rare. Commen sense tells me they have to be. I think it could be a mental disorder or a combination of a mental disorder and a poor up bringing. If you are taught that you are diseased but nothing is wrong with you, eventually you start trying to become diseased.

    I actually tried CBT when I was a child. They medicated me for any bad mood I had. I don’t understand that either, but my rant about medicating children is something to explore later. I do think that there is a lot of improvement to be made in our medical system. This includes the psychological portion. If we remove control from the pharmaceutical companies, we can actually improve the quality of the system more. Things like CBT can be a way of the past. I haven’t ever heard of them actually helping anyone, although I am sure that the outward behavioral change is enough for many people.

    I am really shocked too at the existence of a party like that on a ballot. I don’t need to tell you just how terrifying this is. I hope you enjoy your well earned exhaustion. Sometimes being exhausted is the best way to find a sense of accomplishment. It’s a reminder that you have done something.

    Thank you for your patience while I took some personal time before responding.


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