Annoyances

Sometimes it is difficult to always keep in mind that we are all in this together. These days, chronic illness is more than just common, chronic illness seems to touch every single person in some way. Every person with a serious chronic disease suffers.

One thing that I try to remind everyone - including myself - is that *every* *single* *person* who has a chronic illness, or who suffers from pain due to a chronic and/or incurable illness, has a completely different experience. We each have had different results on tests. We each have symptoms that might have some similarities, but are different overall. We all experience differing levels of pain in completely different areas. Our doctors are different. Our responses to medications are different. The foods that cause us pain or other problems are not the same as the foods that cause pain for others. Some people with the exact same diagnosis will have completely different treatments, different effective therapies, and (frankly) have been told different things about that disease from several doctors.

The ONE thing - the one and only universal truth that is KNOWN - is that doctors DO NOT YET KNOW THE CAUSE OR CURE for most chronic & inflammatory illnesses. There are many people who go into remission, but that does NOT mean that those people have 'done it right'. It means that, yes, they have paid attention and worked to do exactly what they needed, but they were also LUCKY. Most patients have tried that exact kind of therapy, or combination of diet and treatments and 'new groundbreaking therapy' and have not gone into remission. That does not make them careless or that they are doing something wrong. That means that their bodies are not cooperating. Their bodies have become mutinous. They have ALSO worked their asses off trying everything they possibly can to feel better and have not reached remission. It is not because they 'failed'. Their bodies have failed them. This - all of this - means that the 'cure' or the perfect 'treatment' or universal 'therapy' has not yet been discovered. Otherwise we would see people suffering from the same disease all beginning to go into remission. The gossip line runs quickly among these groups... so word would start to get out.

We need to stop shaming each other.
We are all in this together.
We need to quit telling someone ELSE what THEY can or cannot be allergic to. We need to bite our tongues instead of trying to tell someone ELSE what has caused their personal suffering and 'if they only did whatever-the-hell-you-did' they would be magically healed or cured.

In a perfect world, I would love for some random person on the street with no medical training to hold their tongue instead of telling me that I "can't possibly be allergic to biologics", or that I "absolutely cannot have an allergic reaction" to something. I would love to have a nice discussion with someone - someone who is also very sick and really suffering - without the condescending tone when they tell me that "stress caused all of this chronic illness" and that once I destress everything will be fine, but that that concept is "too large to comprehend".

We need to STOP telling other people that - even though they have had MASSIVE allergic reactions to a substance - that no, they actually do not have that allergy. We need to STOP telling other people that their diagnosis - a diagnosis made by more than enough specialists in the field, made with tests and biopsies and symptomatic evidence - that actually, it is a complete misdiagnosis and that is not actually what they have. We need to stop telling people that - even though they are the ones suffering from a disease for decades - that no, you cannot be in any pain because 'I have this friend who never feels pain and has the same disease you do.'

Stop it.

Everyone in the chronic illness community STRUGGLES, and struggles horribly, to be taken seriously by our doctors and employers and even friends and family. So why do we judge each other so harshly?? Why do we always assume the worst about them? Why do we not band together and just give each other the freedom to BE?? Why are 'support groups' available online filled with argumentative comments and rude assumptions and nothing but people telling you that your experience isn't actually real... or correct?!?
This baffles me.

Sorry for the rant...
This has been building up for a while.