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How to Create Your Own Support Network When You're Chronically Sick

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Living with a chronic illness is difficult and complicated. There will be good days and bad days as you fight feelings of loneliness, isolation and the uncertainty of your future. You may feel unsure of where to turn or who to confide in due to the fact there is a steep learning curve when it comes to living with a chronic illness. You may fear a lack of understanding from your closest friends and family which is totally normal. Those living with an invisible chronic illness often feel the least understood and supported because it is hard for people to grasp something they can’t actually visualize. You are far from alone. Research shows that chronic diseases affect approximately 133 million Americans, representing more than 40 percent of the total US population. By 2020, that number is projected to grow to an estimated 157 million, with 81 million having multiple conditions.

There are many aspects of living with a chronic illness that you would never think about until you are in the thick of it. One of those being a support system. Sure, your family and your best friends are always there when you need something. But in some cases, you need more than that. You need more than just someone who is around when you need them. You need someone who actually understands what you are going through. Sometimes you may even feel as though you can’t talk to those people because you don’t want to become a burden or overwhelm them when they are already overloaded with life’s responsibilities. So you don’t know where to turn.  Now, don’t get me wrong, there are great families and friends out there in the world who will go above and beyond to provide support for the ones they love. But in many cases, that just doesn’t happen.

It has been proven over the years that those with large social support systems often will have better health, live longer, and overall better well being. But what do you do if you are not one of those lucky few who has a support supportive group surrounding you? How do you cope with a lack of support? That’s when you know it mind be time for you to find your own support.

If you feel like you don’t have the support you need from those closest to you, try using one of the following six tips to find the support you may need.

  1. Share what you know. This may seem silly, but chances are high that those around you simply don’t understand what you are going through or how your condition works. So by sharing the knowledge you have about your condition, you may open their eyes. You can send them articles online or even invite them along to a doctor’s appointment. Knowledge is power.
  2. Branch out. Even the most supportive of people may grow weary of hearing the same complaints on repeat. To prevent this, you need to find people with like conditions to talk to about what’s going on. Consider seeking help from your clergy or find a therapist to speak with. There are also options like online or in-person support groups out there as well if you feel like you need someone to vent to.
  3. Be selective. When looking for a support group, you need to keep in mind what kind of support you are looking for. There are two kinds of support groups out there. One where people go to vent and talk about life and get emotional support. Or there are groups to discuss research and ways to improve your life. If you get lucky, you will find a group where you can get both. Remember that every group you try out will not be a perfect fit. If you don’t feel like you are getting what you need, there are lots of other options out there.
  4. Assess your coping skills. A person can have all the support in the world, but if their coping skills are lacking they will likely never find the support they are looking for. So take some time and assess your coping skills and figure out the techniques that work best for you. Then don’t be afraid to share what you have learned with those around you.
  5. Join in when you feel up to it. There are going to be times when you are invited to do things and you won’t feel like it. And that’s OK. But when you are feeling up to it, even if it’s not your cup of tea, try to join in. This doesn’t mean you have to wear yourself out in the process, but at least try to go, get out of the house, and enjoy your friends and family.
  6. Find a new doctor if necessary. It is one thing to be misunderstood or unsupported by a friend or family member — but being unsupported by a physician is unacceptable. If you feel that your physician isn’t taking the time to really get to know you and your situation, or doesn’t agree with the direction you would like your care to go in, it is time to find a new doctor. Your doctor should always support you and your choices when it comes to your medical care.

It’s important to be proactive in seeking support, especially since it can help you feel less alone. Making connections will help get you through some of life’s toughest times with illness. So try it, and see how it works for you.

Originally published: November 19, 2019
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