When People Abandon You Because of Your Chronic Illness

When you get sick, not only do you have to process and deal with all of the medications, symptoms and changes you have to make to treat your illness, but socially you have to withdraw from activities you once loved, making it hard to nurture friendships and relationships with those close to you.

It’s hard for loved ones to understand why you might have to call off your plans last minute or have to leave suddenly during the middle of what might seem like an exciting event.  The truth is, they may never understand what you’re going through or what you’re feeling, because they can’t feel it themselves or have no reference for what you are experiencing.

Social Isolation is Serious

People with chronic illnesses often have to make choices for themselves that leave them more socially isolated, which is a risk factor for poor coping, depression, feelings of loneliness and anxiety.  Social isolation can even lead to a shortened life span, according to an article on the  Association of Health Care Journalists.

Social isolation is a serious concern for people living with chronic illness, especially those in the 24-44 age group.  Humans biologically need social contact to thrive.   According to an article in Psychology Today, ‘ When we go through a trying ordeal alone, a lack of emotional support and friendship can increase our anxiety and hinder our coping ability.’  A lack of social contact can lead to feelings of depression and anxiety which then leaves you even more isolated – a vicious cycle that can feel hard to escape from.

The Difference Between Social Isolation and Loneliness

Social Isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people.  It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated.

There are several issues that people with chronic illness face that  can lead to social isolation and feeling lonely:

  • Social stigma experienced by people with chronic illnesses that are invisible or by not having a clear diagnosis.
  • Physical limitations due to pain or fatigue
  • Unpredictability of symptom onset
  • Trigger of symptoms related to social gatherings – ie food, noises etc.
  • Being estranged from family and friends during the onset of illness or lack of strong support system
  • Changes in employment or financial stability

 

Social isolation and feeling lonely are important health problems and should not be overlooked.  In fact, according to the American Psychological Association, social isolation and loneliness may represent a greater public health hazard than obesity and their impact has been growing in the general population.  The chronic illness population is at an even higher risk for social isolation and this problem should be addressed along with others symptoms and risk factors.

What You Can Do About It

When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse.  The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.

So what can you do when you have a chronic illness and have become socially isolated and experience feelings of loneliness?

1) Recognize what it is, Name it and start to understand what it is doing to your mind and body.

2) Retrain your inner self talk to become more positive and rational.  This can be done with the help of a therapist and over time, can be changed.

3) Fight the temptation you have to isolate yourself and recognize situations where that is your ‘go-to’ behavioral response.  Do the opposite of what you feel comfortable doing, such as retreating to your bedroom, and replace it with something social, such as having coffee with a friend in a coffee shop, for starters.

4) Get rid of those negative people in your life who only feed the negative inner voice you have.  Build a support system filled with only positive people who are patient and kind and seek to understand what you are going through on a deeper level.

5) Try one new thing each week that will get you to meet new people. Try a creative painting class, take a yoga class, go to the library.. anything that will get you to meet new people who like doing things that you like to do.

6) Seek out a support group in your community for your illness. This is a great way to meet people who really DO understand what you’re going through and can be a great support for you.

7) Make sure you’re communicating what you need appropriately. A lot of the time when we retreat to isolation, we are doing so because we don’t want to burden others. Our friends and family often feel helpless because they don’t know what we need them to do to help us – so tell them! It not only helps you feel more supported, but helps those close to you feel useful and helpful.

8) Talk to a therapist or counselor – therapy can really help you explore any deeper issues that might be contributing to loneliness or social isolation.  Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.

Do you live in Florida and think you’re ready for therapy?  I am currently accepting new clients both in my st. petersburg, fl office AND online from anywhere in Florida!  Contact me below and share with me how I can help you!

Contact Us
You May Contact Me, Amanda Pratt, LCSW, Here.  Please include a phone number where you can be reached and a few details about what kind of support you are looking for.  I will get back to you within 24-48 hours.
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Amanda Pratt, LCSW

amanda pratt chronic illness therapist

Amanda is a licensed clinical social worker in private practice in St. Petersburg, Florida specializing in working with people living with chronic illness. She is currently accepting new clients at her website www.imaginelifetherapy.com.

2 thoughts on “When People Abandon You Because of Your Chronic Illness”

  1. Hi Amanda! I’m in Texas. What would you recommend for someone like me? I’m in a very rare situation and am completely lost!!! I am chronically Ill and have several very rare conditions brought on by med induced neurokigical distraction, ZYPREXA withdrawal hell…snd the aftermath of it’s devistating continuing tsunami of breathtaking diagnoses and trauma to my body over the past 2 years, after my abrupt taper off the horrific extended 6 year consumption of the highest doses of the drug. That really the best way I can describe it! My family already lost my father to the fault of a top rated medical facility. We all were horrified as we watched him die slowly over 5 years. I started the medication for depression after he died.

    Currently I am experiencing the fight of my life. I have lost 90 pounds, can’t eat or drink because of Dysphagia, Achalasia, and because of the pressure built up in my chest over the past 2 years, I now have 2 Epiphrenic Diverticuli. They fill up with whatever I drink and leak into my chest, and make drinking anything, let’s say, unpleasant! None of these issues were problems before the abrupt discontuation of Zyprexa, as I have cycled thru well over 200 withdrawal effects.

    My family is less than supportive. They have been through it with my dad! They frankly, act as if they just don’t care. Because of several situations of my being victimized/abused as a child, my best friend decided to attack me and lable me eith a “Victim Complex” or “Martyr Complex” and proceeded to send me article after article about this complex, which have absolutely nothing to do with my situation! I do recognize that I am not capable of being the friend I once was concerning being supportive or going out and having “fun” partying. I have reached to several friends and several are concerned, but several have also just blocked me. I was a successful professional in Television production, and now I am fighting for my life. Im riddled with bizzare and serious neurological damage and weird conditions that are 100,000 to 1 and 500,000 to 1. Family members don’t call, they don’t ask how I am, and when I reach out, and in casual and regular light, mid conversation, they just stop talking to me and that’s it. No more communication. It has been so painful that I just pulled away from almost everyone, ESPECIALLY family! It’s just too painful to deal with any if it, especially while I am fighting for my life. Doctors have been abandoning me, because they either are just discriminatory, or they are not capable of caring for my bizzare conditions, or even able to keep their word in finding surgeon’s to help me in my fight!

    So, what’s up with someone like me? Am I socially isolating or are they isolating from me??? I reach out to them, especially when I started becoming I’ll, and they couldn’t be less interested in my situation! I was called disgusting when I started drooling from the first neurological tidal wave, which was considered an embarrassment and I was treated as I was making up my symptoms for attention, which is something that is completely out of character for me! Others just did not want to hear anything negative, as they only wanted to hear positive things, as I did my best to explain my confusing medical issues which were plauging me at that time. Now I have several, very serious diagnoses, and my family has completely separated from me. One family member who was supportive, just stopped speaking to me over the past 8 months. I wrote her and told her I loved her very much, and I still do, but it is just too painful to reach out and ask questions about her life and only get a thumbs up back, or no response at all. I have made an honest effort, and have been aware if being positive and not hitting them with only negative conversation.

    So what is someone like me labeled, or does it even matter? I still do have a handful of friends around the country who love me very much. I won’t lie though, the loss of my family support or care, has been devistating, and I have absolutely no desire to go out, as my neurological damage is so severe that I am shamed by my situation and condition. When I go out in public, people treat me like I have no brain, education, mind, sense of humor, or even quality of life. I would agree with the last point. It’s alarming to be treated so disrespectfully and with such discrimination, especially from doctors! My brain still works! I am typing this letter TO YOU AND LETTING OTHERS INTO MY LIFE and I am sure there are typos, but the concept is there. Even though my condition is serious and the medical community now considers me a “COMPLEX PATIENT,” I still have feelings, and I am treated as a piece of disgarded trash or if a living being, a rabid animal!

    So what would you suggest for someone like me??? Do I just roll over and die? Let the Mayo Clinic take both me and my dad out, him directly, and me over time from the grief of his horrific situation of their killing of my dad??? Yep I said it!!! MAYO! I don’t care! If there are gasps, so what! I am being abysed daily by doctor’s because of my conditions brought on because of the extended grief and the abuse that followed from the medical community. Now I am fighting for my life and over the past 2 years, I have had a series of different “professionals” who have not been able to diagnose my complex issues, as I have grown sicker. Now I’m really sick. I spoke to my sister and told her I’m dying. She won’t speak to me further. My therapist of 6 years, thought I was going to go and kill someone on the anniversary of my dad’s death. In reality, I was going to buy sun flowers to give out to those I love and appreciate, including her. That accusation, with several other situations of indifference and abandonment of my benefit, caused me to lose complete trust in her! I had to fire her, when I probably need her the most. I just can’t continue therapy with someone who would think that of me when I was doing the exact opposite, especially after 6 years of therapy.

    What do I do Amanda? I’m not in Florida, but I DID ask the President of Mayo clinic to help me with this exact issue when WE, THE PUBLIC found out about their “situation” in the demise of my dad. His office told me they would get back to me, and they left me hanging! I was left to find my own help, and obviously, although I thought it was the best decision at the time, that decision turned out to be a medical string of nightmares. Am I bitter? Uh huh! What do you suggest for someone like me? Do ya know any cool folks in Texas or therapist who can bill me for teletherapy via Medicare? Thanks Amanda! My letter is long and scattered, and please excuse it. I’m not well, body, mind or nerves, but my sense of humor is still wicked and in tact and I still have the capability to love, be loved, share, be kind hearted and enjoy company in small doses.Large pubic spaces and generally, people in public, they are unkind to me in my walker! I’ve never experienced such discrimination and downright rudeness in my entire life combined, compared to the last 23 months I have had Tardive Dyskinesia, Dystonia and have walked with a walker! Family is worse though! Ruff and sad, very sad indeed.

    Thanks Amanda!

    1. Hi Bonn Bonn! Thank you for sharing your story and the difficult aspects of your journey. While I cannot offer therapeutic advice/ support here or see you as a client, I can definitely say gosh – you’ve been through a lot and it sounds like you have some fire in you to keep fighting! Not a lot of people understand the experience of living with chronic physical or mental struggles so I’m sorry for all that you have been through, that has been tough. I can help you find a provider in your area offering telehealth in Texas, but medicare doesn’t cover telehealth so it might be better to see someone in person if you can. Please email me at amanda@imaginelifetherapy.com and we can chat further!

      Thank you

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