Relationships are difficult and adding a chronic illness into the mix makes them more difficult. Relationships are all different. We have relationships with our parents, siblings, family, spouse, boyfriend/girlfriend, friends, coworkers, and other people in our lives. It can be a task to balance all of these types of relationships along with making our health a priority.
Chronic illness makes dating hard. We have to figure out when it's okay for us to disclose our illness, symptoms, etc. that we are going through. We don't want to scare off the person we are dating, but we also don't want to leave them in the dark. Their support could be beneficial depending on how they handle finding out about our illness.
We need people in our lives that aren't going to judge us for our health issues; who are going to be okay when we have to cancel plans because we aren't feeling well; who aren't going to push us away because we have to put our health first; who aren't going to tell us that we are too much to deal with because of what we are going through with our physical, mental, and emotional health.
Here are some things that I've learned and feel called to share regarding relationships that I've had/have now in hopes that it will help you navigate your relationships:
I hope you find this information helpful.
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It can be difficult to manage our day with chronic illness. It's important that we find ways that work for us that allow us to function as best as we can while managing our symptoms and resting when we need to.
Some days we make plans and we may have to cancel them and that's okay. We have to be okay with that no matter what others may say or think of us. It's our lives and we have to do the best thing for us and our health. We have to constantly think about our health. Although it may not be fair, it's our reality.
Some days we may feel better than others and that's something we have to accept. Our symptoms may come out of nowhere or may linger around for weeks, months, or even years depending on the illness. We have to push ourselves as well as know when to pull back. It can be difficult to balance.
Here are some things that I do to try to manage my day with chronic illness as much as possible:
There are some responsibilities that we have to do like take care of family, work, doctor appointments, take medications, etc., but it's still possible to manage your day with a chronic illness. Please know that it's okay to say no to people and cancel plans when you need to.
I hope you find this information helpful.
Do you have things that help you manage your day with chronic illness? Let us know by leaving a comment below!
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Researching is extremely important when you have a chronic illness. Unfortunately, we can't only rely on what our doctors tell us about our illness, prescriptions we should take, treatment options we should try, etc.
It's important that we do our own research and be our own advocate. It's exhausting and oftentimes a full time job making sure we go to the doctors we need to go to, getting diagnosed, and finding a doctor who agrees with the treatment options we want to try.
It's crucial to do research outside of one website, book, etc. The more research you do, the better. The information from multiple sources should match up. If you talk to your doctor about the research you find and they don't seem knowledgeable or agree with what you have found, find another doctor.
Wikipedia and Google are not reliable sources. I have also found the Mayo Clinic to not have accurate information about some illnesses. One place to start your research is with nonprofits for your illness. For example, trusted nonprofits for endometriosis would be the Endometriosis Research Center, Endometriosis Network of Canada, the Endometriosis Foundation of Houston, EndoWhat?, and for alpha-1 antitrypsin deficiency, it would be the Alpha-1 Foundation.
Another research avenue is to go to a specialist's website; for example the Center for Endometriosis Care as they specialize in endometriosis or pulmonologists who specialize in alpha-1 antitrypsin deficiency. Gynecologists are not knowledgeable about endometriosis and shouldn't be trusted to give you reliable information. Many doctors are not knowledgeable about alpha-1 antitrypsin deficiency so it's important to get information from a specialist.
Reading about what others have been through with the disease you have can be helpful, too. Oftentimes, patients who are well seasoned with their illness can be more knowledgeable than some doctors. Support groups for your illness may have reliable information as well.
The more research you do the better. Don't agree with any treatment you aren't 100% on board with and don't agree with a treatment you haven't researched. It's your body and you have to live with your decision for the rest of your life, your doctor doesn't and drug companies don't.
Back in 2011 when I first tried Lupron, I didn't do my own research and wish I had. I now have osteoporosis and I'm sure it's from the injection even though no doctor will admit that. I'm 28 years old and have the bones of a 60+ year old. Had I done research, I wouldn't have agreed to have it injected into my body. I trusted what my doctor told me and only went by that. This is why I am so adamant about everyone researching their chronic illness, treatment options, talking with others who have tried different treatments, etc.
I hope you find this information helpful.
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Not having these body parts (uterus, ovaries, and cervix) doesn't make you less of a woman. Being unable to bear children doesn't make you less of a woman. I know how hard it is to feel and realize this because I went through all of these feelings when I had my hysterectomy. It seemed like everyone was pregnant or already had kids and I was in my own little world of never being able to have children. People would say that I could adopt. Although well meaning, I still needed to process all of my feelings to be able to deal with not being able to ever become pregnant. It was a loss and something I had to grieve and still grieve. We may overhear someone talking in a store about something to do with children that may make us upset. Know that it's okay to grieve this loss at any point in your life. Grieving is a necessary part of life and isn't a straight line and your feelings are valid. People don't know what to say when something like this happens and I had to keep that in mind, too. I didn't and still don't want people to tip toe around me having a hysterectomy. It was hard, really hard and when I look back to the year 2014 when I had my hysterectomy, it was the darkest part of my life as I went through all of my feelings. I'm thankful for my family and friends who helped me deal with these feelings.
Here are things that I have done/do to help me cope with my feelings:
Here is a journal entry from 2015:
"I had to make the decision to have a hysterectomy for my own health and safety, but that did not make it any easier to deal with. I knew my chances of having kids was slim before my surgery, but now I will never know if I could have had children since I never tried. I felt like I had to make a choice between having kids or going to pharmacy school and I chose pharmacy school, but still could not finish pharmacy school even though I could not have kids now."
Here is a journal entry from the end of 2015
"Having to choose to have a hysterectomy at the young age of 23 is depressing enough, but having to explain this every time I go to a new doctor is a horrible experience each time. I have had nurses tell me that I am too young to be going through this. I do not need this constant reminder that I will never be able to get pregnant and will be missing out on that experience."
I still have to remind nurses at my current doctor that I've had a hysterectomy when they ask when my last period was. Can't they read my chart and see I've had a hysterectomy without asking every time?
I always wanted to have children and it’s something that I still struggle with, but I keep in my mind that there’s another purpose for me and practice these coping mechanisms when I see that I need them.
Five years later, I'm in a better place than I was when I first had my hysterectomy. I know it's what my body needed (everyone is different). I go to baby showers. I'm there when children are born, and I babysit. I can still be happy for someone else and sad for me at the same time. Growing up, everyone always told me that I would make a great mom because of how I am with children. I have been around children all of my life because one of my grandmother's was a full time babysitter and I became an aunt at 8 years old. I get on the child's level and play with them. Even now people tell me that (they may not know that I can't have children) and I don't let it bother me because one day I may be able to adopt and be a mother.
Is there something you do to cope that I didn't mention? Leave a comment below and let us know.
I hope you find this information helpful. Know you are not alone. Sending you hugs and love.
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Confidence is believing in yourself whether it's your health, your job/career, your ability to provide for yourself and your family. It's appreciating yourself and knowing you are right where you are supposed to be. Confidence doesn't equal having a huge ego. Being confident is a positive emotion.
Confidence is something that I struggle to have every day because I don't feel confident with my health and honestly don't know if I ever will. Confidence is something I had while dancing and in course work through high school. Having to quit jobs because I couldn't juggle it all while in so much pain and having some new health issue start up every time I get a job makes it hard to feel confident in my health. Having to cancel plans over and over decreases my confidence a little each time. Will I ever be able to keep every single plan I make with family, friends, and in business and not have to cancel because of my health?
It's hard to have confidence. It's hard to let yourself feel confident when you feel like your body is constantly letting you down or you feel like you are letting others down. Know that the only person's feelings you are responsible for are your own. You can't control how others feel or respond when you cancel. You know you are canceling because you don't feel well even if they don't believe you and that has to be good enough.
We deserve to be confident just as much as a healthy person. We are all equal and have to view ourselves this way to have confidence in ourselves. We can't see someone as being better than us because that diminishes our confidence. We all have strengths and weakness, but they are different and that's what makes us unique. It's important that we surround ourselves with others that bring positivity into our lives and help boost our confidence.
Self-care plays into confidence, too. Music helps me get pumped about something I'm working on (I'm listening to 90's Pop on Pandora right now!). Reading and writing help me deal with how I'm feeling and in that I get to help others, which also helps with my confidence. Some people find that makeup makes them more confident. The way you dress can help boost our confidence levels, too. I find myself changing out of my T-shirts into a more dressy shirt even if I'm running errands to help me feel better about myself and my body. It's important that you find things that make you confident, too.
I do have confidence in sharing my story, helping others, and know I'm right where I'm supposed to be to help people who are going through a similar journey. Know that you are not alone.
How do you deal with confidence? What do you do for self-care? Leave a comment below!
I hope you find this blog helpful in some way.
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Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.