Relationships
Living with a chronic illness inevitably impacts your relationships, whether your diagnosis is visible or invisible. While some people may not fully understand what you’re going through, finding those who accept your journey and respect your boundaries is key to feeling safe and authentic. It's not your responsibility to manage others’ emotions, but clear communication and setting boundaries can help. Remember, it’s okay to let go of relationships that no longer serve you—true connections will honor your needs and meet you where you are, day by day.
Family
First and foremost, you need to understand that you are not a burden. You deserve to exist and take up space and it is okay if you need to rely on others to complete daily tasks. Your family may also be experiencing complex emotions as they cope with your diagnosis, but it is not your job to manage those emotions. There are resources for siblings and caregivers of people with chronic illnesses and rare diseases. It can be helpful to build a comprehensive support system and find additional care and resources outside of your immediate family to prevent burnout and have a variety of people to call on to help meet your needs. While it isn’t your job to manage your family’s emotions, it helps to understand that they also may be experiencing different elements of grief and to have patience and compassion, while also setting clear boundaries and protecting your energy.
Friendship
Friendships, even ones that existed prior to your diagnosis, may evolve in different ways after you are diagnosed with a chronic illness or other complex medical challenge. Some people simply do not know how to deal with us, despite how hard we try to get them to understand. At that point, it is up to you whether or not to sustain that relationship. Although every friendship is unique, and only you can determine your boundaries, there are some general red flags that no one should have to tolerate: 🚩 They make you feel guilty for being sick 🚩 You feel like you have to lie about, minimize, or hide your symptoms 🚩 They tease you or make jokes at your expense 🚩 They exclude you from activities 🚩 They talk about you behind your back 🚩 They fail to respect your boundaries and are unwilling to accommodate your needs Not every friend is going to be one that visits you in the hospital or holds your hand during a procedure or brings you clean underwear if you forgot to pack a bag. It is okay to have “fair-weather friends” who are there during the best days and “stormy-weather friends” who are there through it all, but respect and understanding should be a basic tenant of any relationship. It can also be really challenging to make friends, especially as an adult with a chronic illness. If you are looking for others going through similar experiences, support groups, social media, and patient advocacy opportunities can be great ways to find a community of folks who understand what you’re going through. However, it can also be helpful to have friends outside of the chronic illness community who share other common interests. Making friends as an adult can be daunting regardless of a diagnosis but engaging in activities you enjoy can help you discover others who enjoy those things as well. Perhaps you visit a local library or bookstore, perhaps you take a local art class, share your writing or photography online in a blog, or join a Facebook group based on one of your interests.
Spouses
In some cases, if you do choose to enter into a long-term relationship, your partner(s) may become your carer(s). This can cause some complicated feelings for both/all of you It is so easy for the lines to get blurred between patient and partner. They will see you at your most vulnerable. They will see you at your absolute worst. Sometimes it is hard to still feel desirable and attractive when you know the person who is supposed to be attracted to you has seen you covered in sick. It is so important to ensure you have support beyond your spouse. Regardless of whether your main carer is your spouse or a parent or a sibling or even a nurse, it is crucial that your care does not fall solely on one person. Burnout is real and it can destroy relationships and both of your mental and physical health. Work with your spouse (or main carer) to build a support system and incorporate other sources of support into your care plan. This way your spouse can remain your spouse. Find ways to keep romance alive, even if it’s just snuggling while you watch a movie. If physical touch is not an option, find other ways to explore what romance intimacy can look like for you. Maybe it’s writing love letters to one another. Maybe it’s creating art together. Maybe it’s playing video games together. Be creative. Find what works for you. It is crucial that you are both comfortable communicating your needs to one another and being willing to share what you are feeling. Resentment builds up when needs go unmet. By communicating how you are feeling, you are creating a conversation that can lend itself to solutions and compromises instead of letting it build into anger and frustration. As previously mentioned, there are also resources available specifically for caregivers and spouses. If you are a spouse, it is inevitable that you will also experience complicated emotions related to your loved one receiving a diagnosis and those emotions are completely valid. It is imperative that you seek support as well and find outlets to navigate those feelings. Grief can sometimes manifest as anger and resentment and it is crucial to process those feelings in a healthy way for the sake of your own mental health and your relationship.
Dating
Needless to say, many of the points that apply to navigating friendships also apply to dating and romantic relationships. In our world, dating and romance is based on a lot of unrealistic images of quiet sensuality and unspoken expectations. In reality, dating requires a lot of open communication, honesty, and vulnerability.
Sex & Intimacy
It can be really scary to ask for what you need, regardless of whether or not you have a chronic illness, but there is an additional layer of trust that is necessary for folks who require a little more care and support during certain activities...