When you are disabled, you often struggle with a lot of health challenges and for the most part, you are an expert at managing your symptoms because a lot of people have lived with them for their whole lives and have years of experience managing them. When you get a new diagnosis, it can be stressful because you are not an expert and may know little to nothing about your new diagnosis. Doctors should explain your new diagnosis to you because it’s their job, but they don’t tell you everything you need to know, and it’s up to the patient to research it. There are some things your doctor won’t tell you because even though your doctor has spent years studying your disability, they won’t know everything because there are some things medical school can’t teach you. Doctors can only understand our disabilities to a certain extent and will never truly understand how our disabilities affect us. I have received a new diagnosis of endometriosis within the last few months which was luckily a diagnosis I had heard of because it’s a relatively common disease, but I didn’t truly understand the challenges you face because I didn’t need to know and disabled people are not expert on every health problem and we are only experts on the ones we have. What should you do when you get a new diagnosis? In this post, I am going to share what I do when I receive a new diagnosis.
Educate yourself– When I get a new diagnosis, the first thing I do is educate myself about that specific condition because you have to be a well-educated patient to be able to advocate for yourself. Disabled people sometimes face a lot of stigma when getting a new diagnosis because sometimes doctors have very little knowledge of the condition you have been diagnosed with. Doctors sometimes will accuse patients of their illness not being real because they have never heard of it before, and the only way you are going to be able to advocate for yourself effectively is by having a decent amount of knowledge about that illness. We can’t expect our medical team to know everything about every illness and if you aren’t a knowledgeable patient, it is going to be difficult to navigate medical appointments because some doctors believe things such as migraine is just headache and if we don’t have enough knowledge about that illness, we can’t teach our doctors that these beliefs are hurting patients and contributing to stigma. Endometriosis is a common disease that most doctors have heard of, but not all doctors have a good understanding of it and sometimes we have to educate our doctors.
Find a doctor that is an expert on your illness- Doctors sometimes are able to diagnose a certain illness, but that does not make them an expert in treating that specific condition. A neurologist might be able to diagnose a migraine disorder because they took a course on headaches, and your gynecologist might have the skills to diagnose endometriosis, but that doesn’t necessarily mean they have extensively studied these illnesses and are experts. When you have a new diagnosis, it is so important that you find a doctor who is a true expert and understands your illness, because when your doctor understands the challenges of your new diagnosis, it is more likely that you will make progress. There is nothing more frustrating than having a doctor who prescribes medication after medication that is not giving you a lot of relief because they aren’t experts in treating your disability and have no idea what they are doing, and are basically guessing. If you are struggling with an illness and want to be taken seriously, the best thing you can do for yourself is find a doctor who has studied your illness extensively. It is more challenging for me to find a doctor because I have had a lot of reconstructive surgeries, and not all doctors want to do surgery on me, but they do exist and are so important for avoiding more health problems.
Take a look at your nutrition– Pain medication can help people who have been diagnosed with an illness that causes severe pain get some relief, but you should try to not rely on medication if you don’t have to, because there are negative health effects for long-term use of pain medication. When I was diagnosed with endometriosis, I was prescribed pain medication because my periods are more painful than the average woman and there is no shame in taking pain medication if you need to. Pain medication can help give you some relief, but long-term NSAIDs can have harmful health outcomes, such as stomach ulcers, and we don’t want to rely on them too much. Pain management is so important because out-of-control pain levels decrease your quality of life, and we want to do our best to manage our pain, but medication is not the only way to improve your pain levels. Nutrition plays a major role in improving your pain levels because although you probably aren’t going to cure your illness by eating healthy, you might be able to improve it by eating in a way that supports your pain. The diet you should follow is going to be different for each person because not everyone will see improvement by cutting out dairy, and it depends on what disability you have. When I get a new diagnosis, I always look at my nutrition because if you are consistently eating trigger foods, you aren’t going to make progress. Nutrition plays a major role in pain management and is one of the first things you should get right!
Find an exercise routine that supports your pain- Exercise can help improve pain levels, but there are some types of exercises that people with certain medical conditions should never do because they can aggravate your symptoms and make them worse. I struggle with chronic pelvic pain because of endometriosis, and luckily, my pain has not forced me to do an entirely different exercise routine, but the intensity of some exercises has changed. Before I lived with pelvic pain, I would do two-hour core workouts because I enjoyed that, but now, I would never put myself through such torture and will not make my core workouts longer than an hour. Core workouts often put a lot of pressure on my lower abdomen, which can trigger more pain, and I would rather do an upper body workout that is not going to put any pressure in that area. Exercise can help improve pain, but it is so important that you are doing the right kind of exercise because if you are doing an exercise that puts a lot of pressure in the area where you have pain, it’s only going to make you more miserable. I have even stopped walking around with ankle weights every single day because it sometimes aggravates my pain, and I am finding I get better results when I walk with no weights at a faster pace. Make sure you are exercising in a way that helps support your pain, and sometimes you have to change your workout or stop exercising entirely to be able to do that.
Find a support system– A new diagnosis can sometimes feel isolating and if you don’t have someone in your life who understands your challenges, you might think no one gets it, but I promise you’re not alone, and there are people out there struggling just as much as you. When you live with a health condition, a support system is so important because people without your illness or disability may try to understand your pain but aren’t going to, and you need to connect with other people who have your disability to get the support your family can’t give you. Social media is a great place to connect with other disabled people who truly get it because the Internet is filled with content that is created by disabled people about many different disabilities who can provide support in ways non-disabled people can’t. If you are struggling, you need a support system of like-minded people because other disabled people will validate your pain instead of telling you it’s not real, and you will feel less alone with a good support system.
When you get a new diagnosis, it can be scary because doctors don’t give you all the tools you need to navigate your illness, and some things you have to figure out for yourself. There are a lot of unknowns to living with a new diagnosis, and it is okay if you are a little scared and know very little about that illness, because it takes time to become an expert, and there is no shame in asking people in your community for guidance. People sometimes think that disabled people are experts on every disability but that is not true, and we are only experts on our specific disability, and most disabilities we know very little about because we don’t need a lot of knowledge about medical conditions we don’t have. Disabled people who get a new diagnosis may have heard of our new condition and might be able to tell you what it is, but it is likely that we don’t know as much about our new health challenges as people think we should, because even disabled people sometimes have to Google a medical condition. What do you think people should do when they get a new diagnosis? What do you think people should do when they get a new diagnosis? If you like this post, please leave a comment and share with your friends.
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