Advice For The Loved Ones Of The Chronically Ill

About a month ago, I decided that I wanted to do a series on how chronic illness affects relationships. Throughout the years, I’ve seen how Trigeminal Neuralgia has created, disbanded, and altered the personal connections I pursue. Between family, friends, romantic relationships, the public, and even our relationship with our own bodies and minds, there’s a lot of ground to cover. For this reason, I chose to reach out to some of my chronically ill friends for help. The initial question I asked was, “What do you want people to know/do when it comes to your illness?” The answers came flooding in and I immediately became overwhelmed. Not necessarily by the sheer volume of answers, but by the differences and the range of opinions when it came to this topic. The truth is, I didn’t account for individuality. When I speak with people about chronic illness, we naturally tend to stick to the things we have in common. Even if we don’t have the same illness, a lot of the experiences and symptoms can be similar. Sometimes it’s difficult to realize and remember that every person with a chronic illness has had a unique experience, grew up differently, copes differently, and may be at a different stage in life than you. After taking all of this into account, I realized that I had to rewrite EVERYTHING. So now that I’ve procrastinated for a whole month, I feel like I’m ready to attempt this!

One of the hardest things about chronic illness is the isolation. Socialization is difficult when it’s hard to leave the house and function in general. As a chronically ill person, I’ve become quite accustomed to isolation, but if anything, my need for human contact has actually increased. However, I think some people are intimidated by illness and that’s completely understandable. Chronic illness IS extremely intimidating. The loss of your health, lifestyle, and day-to-day predictability complicates every aspect of life… especially your relationships. On one hand, it can strengthen a bond. Trigeminal Neuralgia has forced me to become more vulnerable with and reliant on my loved ones. If you knew me before I got sick, you would know that I was an extremely independent and closed-off person. However, it didn’t take long for me to realize that I couldn’t do things by myself anymore; TN isn’t a “grin and bear it” kind of disease, as much as I try to make it one. I feel so fortunate that my family and a few of my friends were able to pick up the weight that I couldn’t carry. I realize how much I need them and I believe there’s strength in knowing not to take them for granted. On the other hand, chronic illness can dissolve a bond very easily. When your health takes away your ability to make firm commitments, it’s very difficult to make a relationship work. It’s a constant battle of deciding whether to put energy into healing yourself or putting it towards relational maintenance. As much as you want to put it into both, you only have a limited amount of energy. If that person doesn’t understand what you’re going through, it’s easy for them to feel overwhelmed and neglected. On top of that, it’s easy for the chronically ill person to feel like a burden.

There’s such a delicate balance when it comes to making relationships work when a chronic illness is involved and it’s not simple for anyone. My original purpose in writing this blog was to diminish some of the intimidation that comes with chronic illness. However, I don’t know if that’s possible. It’s such a unique experience for every single person and all of us have our own preferences when it comes to our relationships. My new purpose in writing this is to advocate, raise awareness, and start a discussion. So, with this in mind, I want to share some of the answers I got to the question above.

“What Do You Want People To Know/Do When It Comes To Your Illness?”

  1. I’m putting “communicate” and “ask questions” as number one because not all of these answers will apply to everyone with a chronic illness. There’s no harm in asking someone what they need, but there can be harm in assuming. My friend @syddykslag put it perfectly by saying, “Begin opening up a dialect. Ask them how they want you to be involved, if they want you to be involved, and how you can best be there for them when they are struggling.”
  2.  I would say the most common answer I got was that “it means a lot when people do their research.” Informing yourself and being genuinely curious is one of the most sincere forms of flattery to a chronically ill person. @andrayabitschy says, “it’s a great way to show you really care about what they’re going through.” She added the importance of doing your own research, opposed to just listening to your friend. Doing 5-10 minutes of personal research is a great way to boost your friend’s mood.
  3.  Check in on us every now and then. Chronic illness can be a very lonely experience –  a text, phone call, email, or letter can make us feel valued and supported. It’s a reminder that you’re there for them, even if you can’t physically be there. Life gets busy and we understand that.
  4. @maralaughlove says, “know I’m doing the best I can and be patient.” As a chronically ill person, it’s easy to get discouraged and to feel like you’re not doing/being enough. @syddykslag says, “Learning to deal with your chronic pain is an everchanging battle. Those who suffer are constantly learning how to live with it. There are often large mindset shifts, good times and bad, and chronic pain isn’t linear.” It helps to have someone recognize our efforts, be patient with us, and to let us know that they’re beside us through it all.
  5.  @moke_nichol says, “sometimes we need more support than advice.” I think this goes back to communicating and asking us what we need in the moment. In a world where people are constantly trying to tell us how to cure ourselves and get healthier, it’s sometimes nicer to hear “I might not understand, but I’m here for you.”
  6. Both @cathrynb73 and @crissyl444 said, “keep inviting us, even if we can’t go.” Be as flexible as you can be. Chronic illness makes it difficult to keep commitments, but that doesn’t mean we don’t want to try. Even if we can only make it to 1 out of every 10 events, the invitation means the world to us. @traumagic_journey added that you should try to “not take it personally when I have to cancel plans again.” It’s likely not your fault or something you did wrong  – just our bodies being difficult. As @shelby.quinn1994 put it, “I don’t choose the bad days.”
  7.  @ashton_frische says, “We are more than our pain. Instead of asking what our pain level is, ask us how we are.” While we have to be mindful of our chronic illness, we’re still humans when it comes down to it.
  8.  Advocate for us and help us raise awareness. If we don’t have a family member or friend to take us to an appointment, ask us if you can tag along. Being an extra set of ears or a note taker can be really helpful when we’re not feeling good.
  9.  Another really common answer I got was about empathy. You don’t have to fully understand what we’re going through, but as @syddykslag says, “sometimes we just need to know that someone is trying to see things from our perspective.” @chronic_andy added, “It could be you. Chronic illness doesn’t discriminate.” Putting yourself in our shoes can be a good tool when you’re feeling burnt-out or impatient.
  10.  Lastly, while we’re on the topic of feeling burnt-out – TAKE CARE OF YOURSELF. @syddykslag says, “Don’t forget that we want to know how we can best support you through this all, too. Loving and being a support for someone who is chronically ill can take a toll on YOUR mental health. Check in on yourself. Know that even though you may not always say or do the right things, we appreciate you more than you know.” We want to be the best friends that we possibly can be, but it’s easy to be off in our own world when we’re struggling. If you feel neglected or left out, be honest with us. We may not want to hear it, but it’s important for us to know how you’re feeling, too.

 

Overall, chronically ill people need the same things from a relationship that everyone else needs. We need support, communication, understanding, patience, and love. Forming and maintaining a relationship when there is a chronic illness involved IS difficult, but it can also be so incredibly strengthening and rewarding. These are people that will show you to be grateful for the little things, that love and appreciate harder than anyone, and that will go the extra mile for the people they love! I want to add that I am extremely grateful and proud of everyone that replied to my question. I wasn’t able to include every answer in this blog, but I look forward to using them in the future. Thank you for your vulnerability and honesty. Lastly, thank you to the people that support us and care for us on a regular basis. You deserve all the acknowledgement and appreciation in the world – we couldn’t do this without you!

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