Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Chronic Illness Struggles- Is It My Disease Or Do I Need To Seek Treatment?
If you spend much time interacting with the autoimmune and chronic illness community, you may have noticed one of the most frequent types of questions asked is “Is this normal or do I need to call my doctor?” The well-meaning response of the other group members is often a chorus of, “oh yeah that happened to me once and it was X, just do Y.” A few more cautious types may suggest you talk to your doctor. While it is very tempting to take the assurance of that first group that is sure they know what you are dealing with, don’t lose sight of the fact that they aren’t you. The unfortunate truth is, even people with the exact same conditions will react to those conditions, and the treatments for them, differently.
Sometimes, there is truly no harm in trying out that suggested remedy for what the group thinks you probably have (when they happen to agree.) Other times, it leads to unnecessary suffering, or worse. Assuming those chest pains are costochondritis (common among many RA patients) when it may be your heart, is not a safe bet. Walking around with a broken foot for a week because you think it is just your RA acting up in a new, more intense way, is also no walk in the park. So why suffer? Pick up the phone and talk to your physician. They can help you pinpoint the cause, or at least rule out anything dangerous, the issue will also be added to your health record. Sometimes those little annoying symptoms you aren’t discussing with your doctor are the piece he/she needs in order to fine tune your diagnosis. Remember, managing chronic illness is a team sport, make sure your co-captain has all of the information.
Since chronic illnesses come with chronic symptoms, and those symptoms rarely all arrive at the party at the same time, you are going to find yourself playing “is this worrying or just how I am now” on a regular basis. To prevent missing the important symptoms or driving your doctor insane with every little tiny “regular for you” symptom, it may help to ask yourself a few questions before you decide to call the doctor.
If you’ve got a brand new symptom, even if it is an expected symptom, make the call. That needs to go in your record. It is a big part of how your medical team knows if the treatments you are receiving are truly working fr you. It also often lets them know how aggressively your disease is progressing.
Sometimes, it might also be the heads up that they need to realize you are having a negative reaction to the medication you are on. The point is, in order to give you the best possible care, your doctor needs to know what you are experiencing. Don’t assume they know because everyone experiences x when they have what you do. They aren’t treating everyone, they are treating you.
If the pain scale number you picked is higher than what you are used to living with, or if the pain is new, or especially more intense than you are used to, or just plain too persistent and making life suck, call your doctor. Chronic illness does come with chronic pain, however, that doesn’t mean you just have to suffer with it.
Pain remedies are made to make people feel better, just because you have extra pain compared to “normal people” doesn’t mean you shouldn’t also get relief. Also, and this is important (and something you may occasionally have to remind your doctor of), just because you have a disease punctuated by chronic pain, doesn’t mean every pain is related to that disease. Other things can still go wrong. You can break things, tear things, organs can misbehave in ways entirely unrelated to your condition. You are more than your disease. Suffering with a kidney stone because you think it’s just your body being its usual un-charming self is senseless. (Ask me how I know.)
Which brings us to the last two questions. Is it interfering with your life and is it treatable? Whether it is an expected part of your disease or not, makes no difference when it comes to these answers. It may be entirely normal for joints to break down and change shape when you have RA, that doesn’t mean you have to just sit by and hopelessly watch as it happens. If the “normal” symptoms are stopping you from living your normal life, talk to your doctor.
If there are treatments for your symptoms that someone without your disease would reach out for, you should too. Again, expected symptoms does not mean things you have to suffer without treatment for. It seems many people fall into the belief that those chronic illness symptoms are just their cross to bear, that this is just how they have to feel. Honestly, that is rarely the case, few and far between are the completely untreatable symptoms. Generally, you will find there is a therapy, medication, or fix for whatever you are suffering from. Don’t suffer, seek help.
Life with chronic illness is certainly not a walk in the park. Spending so much time and energy on feeling well can seem like an uphill battle. Having a well-informed doctor on the team to help get you up those inclines makes all the difference between well managed disease and disaster. Getting their help to diagnose the root of a symptom is often the first step in finding relief for it. Once you know what the problem is, those well-meaning chronic illness warriors will be able to offer much more helpful advice.
Tenacious ME 