Having any type of chronic illness (endometriosis, alpha-1 antitrypsin deficiency, PCOS, etc.) doesn't only take a toll on the organs that are directly affected by disease. Chronic illness takes a toll on the entire body including mental health. Chronic illness can limit what you're able to do. It can make you feel isolated and alone. It can make you feel unworthy. All of these are valid feelings, but it's important that we talk to someone who specializes in counseling, therapy, and/or psychiatry to get the help we need so that we don't get stuck in these feelings 24/7 and are able to live.
Counselors listen to what their clients are going through. Sometimes it's helpful just having someone to talk to and listen who is not directly part of your life and decisions you make. Counselors are not doctors, therefore they can't prescribe medications.
Psychiatrists are doctors and don't listen as long as counselors do. They ask questions to make sure you aren't a danger to yourself or others and can prescribe medications for depression, anxiety, or other mental health illnesses. Needing medications for mental health illnesses is not a bad thing and shouldn't be stigmatized. If you injured your knee and needed medication, would you take it? Yes, especially if you were experiencing a lot of pain. Mental health should be viewed the same way.
I think everyone, especially those who suffer with some type of chronic illness should have a counselor and/or psychiatrist. It can be extremely difficult to talk to our family, friends, or those closest to us about what exactly we are going through for fear of being judged or misunderstood.
I hope you find this information helpful.
I have talked with many people who have changed doctors or are looking to change doctors for varying reasons, but the commonality is that they don't feel like they were receiving standard of care from the doctor they changed from or their current doctor. YOU know your body better than anyone. If a doctor is trying to push a treatment on you that you don't agree with or don't want to put in your body, you have the RIGHT to say NO and get a new doctor. If you feel like the doctor doesn't know what they are talking about, you have the RIGHT to get a multiple opinions from different doctors.
Changing doctors can be a daunting task and elicit anxiety, but it can be necessary for you to receive proper health care. I know this first hand as I have been to over 20 doctors in the last ten years trying to find answers for the chronic illnesses I've been suffering with. Unfortunately, the first doctor we go to isn't always the best or most knowledgeable. Hopefully I can provide you with some tips that help minimize these feelings as much as possible. These are some things I did right before I had my hysterectomy in 2014 and continue to do so. I wish I would have done these much sooner.
I think being as detailed as possible will only help you with your new doctor and make them realize you are only trying to find answers to help you feel better. Unfortunately, some doctors will still think we're being dramatic or a tough patient to please. If you experience this, please find a new doctor. It IS NOT all in your head. You DID NOT do this to yourself. You ARE NOT a tough patient. You ARE NOT being dramatic. You ARE important. You deserve the BEST care possible.
If all of the above information doesn't allow your new doctor to see all of this, they aren't worth your time, money, aggravation, or tears. It may take you seeing several doctors and essentially starting over to find the right doctor for you and that's okay. There isn't anything you did wrong if this is the case for you. I've been there. It may seem like a full time job doing all of this for your health, but if you don't do it, who will? You only get ONE life and you ARE worth it.
Back when I was a teenager just diagnosed with endometriosis, I thought it was wrong to change doctors or contradict what your doctor is telling you. I thought I could trust them. However, I have come a long way since then. I now know changing doctors has been necessary for my health and advocate for people changing doctors if they don't trust what their doctor is telling them, like how they are being treated, etc.
Here are two examples of recent doctor changes; one that I felt I needed to make and one that was out of my hands:
In January, I had surgery for a kidney stone by a urologist I had just started seeing. After this procedure, I was still having pain and infections a month later. This urologist told me it was because my body was still recovering from having a stent and then it being removed two weeks later. I decided I wanted a second opinion and made an appointment with a urologist I trusted who was two hours away. The appointment would be the following month, two months after having surgery.
During my appointment, I told the new urologist about the surgery I had two months prior and that I was still having pain and infection. He agreed that having lithotripsy and a stent in two months ago wouldn't still be causing my issues. He tested my urine and said it showed infection; he prescribed me an antibiotic that I hadn't been on. I felt better within a week and haven't felt like I had a urinary tract infection since.
Most recently, the gastroenterologist I saw for the first time left the office. I only saw this doctor one time and had no control over being referred to a different doctor in the same office. Before the appointment with the new doctor, I had been to the emergency room six times since January. I printed all of my records from my patient portal from the hospital and went to medical records to get a copy of my most recent CT scan. Even though I had been to that office before, I felt like I was essentially starting over and would rather be over prepared than under prepared. I didn't want to continue repeating liver enzyme tests as that would be putting off surgery even longer and I had proof that they were higher than normal multiple times. I'm very thankful that they looked over all of my records that I brought and agreed with me. Had I not brought them, I may be in a different situation.
Moral of these stories: Trust your gut. Trust your instincts. Trust your body. Keep fighting for your health. If something your doctor is telling you doesn't jive with what you know, it's okay and may be crucial for you to get another opinion no matter the illness. If your doctor isn't hearing what you're saying or treating you properly, it is okay and may be necessary to change doctors. You have to take care of yourself and do what's best for you.
I hope you find this information helpful.
Planning while living with a chronic illness can be extremely exhausting. I think it's crucial to have a system in place that makes planning your day out as easy as possible. This is something I've had to do my entire adult life. Having a chronic illness makes it more difficult to travel, find places to eat if you have diet restrictions, as well as do day to day tasks like take a shower, cook, and clean. I'm going to go through some things that I have found helpful while balancing life with a chronic illness.
I use a weekly planner to write down everything I need to do for the next week. This includes things like doctor appointments, grocery shopping, vacuuming/cleaning, laundry, class schedule while I was attending college, etc. I try to limit activities that are more exhausting in a given day to two. If I have a doctor appointment, I'm not going to plan to do much that day because I need to mentally prepare for my appointment and don't know how long my appointment is going to last.
Lately when I've been traveling, it's been for day trips to visit family, friends, and attend doctor appointments. I try not to do more than two day trips in a given week because of how I may feel after. I plan out as much as I can, like what I will be eating while I'm traveling. I take some type of granola bar with me to snack on just in case I need it. Depending on how far I'm driving, I try to have at least one rest stop that allows me to get out of my car, stretch, use the restroom, get gas, etc. It's also important that I have nausea and pain medication on hand (if I have any) just in case these symptoms arise while I'm gone. I use my GPS to know how long my trip will be and where the halfway point will be so I can plan when I'm going to stop at a rest area.
I also schedule rest days during the week. I try to give myself at least one rest day (lately more with the pain I've been experiencing) where I don't have anything planned and can relax as much as possible. This may consist of working on my phone or computer, but I'll be laying in my bed or sitting on the couch while doing so.
I use the Calendar and Notes apps on my phone, too, to help me keep track of what I need to do each week. It can be helpful to have the same information in multiple places, especially if you are experiencing symptoms that can be distracting like pain and fatigue.
What do you find is helpful for you in planning out your day while functioning with a chronic illness? Do you have questions about this blog? Leave a comment below!
I hope you find this information helpful.
Some medications are necessary to keep people alive (such as radiation and other treatments for cancer and augmentation therapy for alpha-1 antitrypsin deficiency), which outweighs the side effects if that's what patients are looking for. However, with other illnesses (for example endometriosis), those suffering are trying to decrease their pain and other symptoms as well as be able to bear children.
I talk about Lupron frequently because of what I and so many others who are suffering with endometriosis have been through when we tried this as a treatment. Lupron is an injection that is used to treat prostate cancer, but many doctors/gynecologists use it to treat endometriosis. Because it is used for cancer treatment, this makes it a chemotherapy drug. Endometriosis is not cancer even though it can spread throughout any part of the body. So why are doctors trying to treat an illness that isn't cancer with a chemotherapy drug? This is one question that has yet to be answered other than with the response money.
Side effects that people who use Lupron can experience and doctors may not tell patients include osteoporosis (thinning of the bones, brittle bones no matter the age), suicidal ideations, brittle or breaking teeth, hot flashes/menopause/night sweats, headaches, among others. Oftentimes, these side effects are irreversible meaning once you have them, you can't improve them. For example, once you break a tooth or have osteoporosis, you can try to prevent breaking other teeth by taking more vitamin d, calcium, etc., but you can't grow a tooth to replace it. Once you injure a bone, you can't go back in time to not injure the bone. You can use crutches or a splint to try to heal the bone as much as possible, but it will never be the same. This is how side effects can be life altering.
Lupron isn't the only medication that causes harmful side effects that may be worse than what the medication is trying to treat.
Should money outweigh the side effects that patients may experience from a medication? NO.
Is it true that doctors can't predict which side effects each patient will have from the medication? YES, but patients still have the right to know all of the information about the drug from their doctor upfront.
Should doctors give patients ALL of the information about a medication before asking the patient if they want to use it as a form of treatment? YES.
Unfortunately, this isn't how the health care system or the world works. We are responsible for looking up information about our illness, treatment options, and any other important information that could affect our health care. We have to be our own advocate.
Please research the treatment options you are being offered for your chronic illness as well as other options you may have before making a decision because side effects may not go away and can be life altering. It's important to know the side effects that are possible and weigh your options with the illness you are trying to treat.
I hope you find this information helpful.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and upcoming book "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.