Why You Shouldn’t Be Afraid to Ask for Help

By Barby Ingle, PNN Columnist

We all have lives to lead and sometimes we must focus on ourselves before we can help others. There's nothing wrong with that.

But what if your health (or lack thereof) prevents you from accomplishing something good for yourself and others? What can we do to become more independent and productive while living with a chronic pain condition or disease? 

Here are three things to consider:

1. Social isolation is not healthy

2. Independence can be healthy

3. It's okay to ask for help  

One of the people in my life is the most independent person I know. “Em” only asks for help when she needs it, but often fails to recognize when the need arises. If Em asked for help more often, things might have gone differently in her life and been much easier.

I've been thinking about this recently. I've been balancing my need for independence as a person in pain with my desire to be more open with people. We all want to feel more independent from our caregivers, family and friends. But we also want to stay connected. Seeing some of the challenges in Em’s life reminds me to ask for help more often.

In my books and columns, I have freely shared my life experiences, tips, tools and resources to help others. That helps me feel open and transparent, but it's usually about things I have been through and already found solutions for. When faced with a new challenge, I recognize that I isolate more than I should.

Like my friend Em, I need to find more ways to connect and ask for help when needed. We all need support from others, even if it's just someone listening or offering advice on handling a situation.

When I’ve asked for help, it didn't always go how I envisioned. I may have asked the wrong person for support or had expectations I put on that person that they could not live up to. I had to learn to be okay with the service they offered, rather than be upset and sad when they could not provide what I expected.

The more I learned about their strengths and what they could do, the better I felt asking for their assistance. Asking for help shows that I trust them enough to let them into my world. When you ask for help, you are not weak. You are human.

Asking is not always easy. You have to stop pretending that you can handle everything yourself and that everything is fine. You need to accept the support of your friends and family without feeling like you’re burdening them or making them feel bad about themselves. Asking shows them how much they mean to you.

Here is an excellent example of a recent conversation I had with Em about a friend who wanted to be more social and live life more fully. Em recognized her own limitations. 

"She asked me to meet with her more regularly. Saying she needs people in her life at this difficult time. I am unable to 'be there' for people. I am okay with hanging out occasionally, but I barely have the energy to do basic things each day," Em told me.

My response to Em was this:

"I get it. Explain that you are a chronically ill patient and enjoy connecting when you are up to it, but physically hanging out or texting, talking and engaging cognitively takes a toll on your energy and health. You understand her desire to remain social and the life challenges it takes to follow through. You do best by text, when you have the flexibility and health to answer. You understand her need to be flexible too. She will be in your prayers. Tell her not to be upset if you have to turn down an invite. It doesn't mean you don't want to connect, just that you will participate when you can." 

We must learn how to manage our emotions better so that they don't rule our lives. That means taking a step back so that we don't make decisions while in the middle of a panic attack or depressive episode. And sometimes we just need to hear the answer and decide what to do with it.

Asking for help is complex and we won’t always get what we want. At the same time, we have to step out of our discomfort to make social connections, take down our protective walls, and connect with humanity. Being your best advocate, having others in your life, and maintaining boundaries will help you live life to the fullest. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

Staying Socially Connected Can Help With Chronic Pain

By Jill Suttie, Greater Good Science Center

Many people live with chronic pain. Whether it’s from injury or illness, chronic pain can affect a person’s mood, relationships, work productivity, and more, making it difficult to enjoy daily life.

Unfortunately, getting pain relief can be a complex process. One reason is that it involves both physiological and social-psychological factors — meaning, pain doesn’t just come from having a fever or breaking your arm, but other things happening in your brain, body, and environment. For example, your experience of pain can be lessened by things like distraction, listening to music, or practicing mindfulness meditation.

As researcher Laura Case of the University of California, San Diego, explains, “There’s no one-to-one relationship between activation of sensory nerves and your experience of pain or touch… Though there’s debate about which brain areas correspond to our final pain experience, all of the main players are interconnected with cognitive and emotional brain areas.”

Now a new study that she coauthored with Jennifer Baumgartner suggests another potential influence on pain: feeling socially connected.

A Sense of Belonging Helps

This new study reanalyzed measures collected in an earlier study, in which a group of chronic pain sufferers had been randomly assigned to an intervention shown to reduce pain (sleeping with a heavily weighted blanket) or to a control condition (sleeping with a slightly weighted blanket, which is considered non-therapeutic). After sleeping with their assigned blanket for a week, changes in people’s pain levels were assessed, and the two groups were compared to each other.

In the earlier study, the pain sufferers had also reported on their anxiety and depression symptoms, levels of loneliness, and sense of social connectedness—not how many social connections they had currently, but how generally close they were to other people and how strongly they experienced a sense of belonging. But these had not all been analyzed to see how they related to pain and pain relief from the blankets. That’s where the new study came in.

The new findings showed that people who were more socially connected experienced less pain than those who were less socially connected. After taking into account differences in expectations for pain relief and people’s initial pain levels, those who were socially disconnected felt more pain relief from the weighted blanket than from the lighter blanket, while more socially connected people received equal pain relief from both blankets.

For Baumgartner, these findings suggest that having a sense of belonging provides some level of protection against pain, regardless of any blanket intervention.

“Social support is really important for things that could potentially be threatening, such as stress or pain,” she says. “Having an internalized feeling of being connected with people has an effect on our physical sensations.”

Why would a sense of belonging help with pain? Neither Case nor Baumgartner is sure why.

However, in their study, people who were more socially connected had less anxiety, which could be a factor. Socially connected people probably feel safer and less anxious, says Baumgartner, because they know they can lean on others for support when they’re hurting. Less anxiety means less vigilance around unpleasant bodily sensations, which could decrease their experience of pain.

“Anxiety is strongly coupled with pain, exacerbating people’s surveillance of pain within their body,” she says. “So, having less anxiety is protective—no matter what intervention you receive.”

Case, who studies tactile sensations, says that positive social touch — like receiving a friendly hug or massage — has been shown to reduce pain sensation, and people who are more socially connected likely experience more of those types of touch. Someone who doesn’t have that in their lives much may crave soothing tactile pressure, which is why the weighted blankets can help somewhat.

“If you have difficulty feeling close to others, maybe there are some sensory ways to get around that and help your pain,” she says. “Deep pressure is calming, because it’s associated with the safety of being close to someone else, of being held and protected.”

The Power of a Big Hug

Surprisingly, feelings of depression didn’t seem to affect the relationship between social connection and pain, even though depression has been tied to pain in other research. While this study’s finding might prove to be an outlier, it could also suggest that the hyper vigilance accompanying anxiety is more impactful on pain than feeling down.

Either way, it appears that social connection matters when it comes to pain. However, that can’t be manipulated in an experiment. Baumgartner explains that this trait tends to develop early in childhood and may be tied to general attachment styles (secure, anxious, or avoidant). Since these are not easily changed, it’s good to have a useful, non-pharmacological treatment for pain relief in those without good social connectivity, like the weighted blanket.

“The weighted blanket doesn’t involve any sort of social situation at all, but it still seems to have the ability to help people, to some extent,” says Baumgartner. “Though there haven’t been enough rigorous studies done yet, I’m pretty optimistic that a weighted blanket could serve as an alternative or an adjunct to pain treatment—or maybe even a strategy to prevent people from getting chronic pain in the first place.”

Case says that it could substitute in some ways for what’s missing for people when they tend to be avoidant of others.

“Just anecdotally, people [in the study] found a weighted blanket tended to make them feel like they’re getting a big hug, and it’s relaxing and calming,” she says. “A weighted blanket isn’t a cure for chronic pain, and it’s not going to help everyone. But some people in our study did find it valuable.”

Case and Baumgartner’s study adds to a growing body of research showing how important social connectedness and social touch are for our health and well-being — something that’s been getting more attention in recent years. In fact, in a recent advisory report, the U.S. Surgeon General, Vivek Murthy, argued that our country is facing a “loneliness epidemic” that is affecting our health and longevity and that we need to create more opportunities for people to connect and build a sense of belonging in their lives.

Now, we know that social connection may also help those who suffer from chronic pain.

“Psychosocial factors are not peripheral to someone’s sense of chronic pain; they are central,” Baumgartner says. “Connecting with people and seeking out positive, healthy connections within your social environment is critical.”

This article originally appeared on Greater Good, the online magazine of the Greater Good Science Center at UC Berkeley.

How Chronic Pain Affects Relationships

By Victoria Reed, PNN Columnist

People with chronic pain are often engaged in a battle with their own bodies. Unfortunately, sometimes we also struggle to be believed and supported by family members, friends and doctors. While some may be fortunate to have a supportive spouse or significant other, many pain sufferers lose their life partners along the way, as well as friends.

Pain can take a toll on our relationships. In my own experience, a good friend slowly faded into the background during a particularly difficult time when I was having numerous flares from rheumatoid arthritis and fibromyalgia. The flares cause debilitating fatigue and severe pain. I would often need to cancel plans and never could (and still can’t) predict which day I would wake up feeling awful.

Sometimes when I did not cancel plans, I would end up being miserable the entire time and would regret my decision. Eventually, the invitations and phone calls dwindled, as I was probably considered unreliable.

During that time, I would go for weeks struggling to function and keep going for the sake of my family and young children. But life doesn’t stop when you have a chronic illness. Homework still has to get done, as well as housework, financial matters and shuttling the kids to and from school and to sporting events.

One time, as I was driving my daughter home from gymnastics practice, I was so tired that my car ended up nose to nose with another car in a turning lane! I just barely missed having a head-on collision! Fortunately, the woman I almost hit wasn’t angry, but was actually concerned and asked if I was okay. The experience was frightening because I’d put my child in danger by driving when I was so fatigued.

It was then that I realized how serious my fatigue was and worried about the effect it was having on my relationships and family. Unless you actually experience this kind of fatigue, it can be hard to really understand it.

Additionally, my husband (at the time) was having trouble coping with my illnesses. We had been married for 18 years when we decided to divorce. I obviously wasn’t the same person that I was in the beginning and couldn’t contribute an equal share in the relationship.

The truth of the matter is that chronic pain is hard on everyone. It takes its toll not only on those physically suffering, but on spouses and significant others as well. Some make it known that it’s not working, while others quietly build resentment until they can no longer stay in the relationship. Then, seemingly out of nowhere, it’s “I want a divorce” or “I’m leaving” or “I can’t do this anymore.”

Perhaps they are overwhelmed by increased household chores and responsibilities or feel neglected in some way. Or maybe they fall out of love because you are not the person they married or agreed to be with. Perhaps they are stressed because of the additional financial burden resulting from your lack of income. Perhaps they don’t believe in your illness or think that you are faking your symptoms.

I certainly don’t have all the answers, but you must then pick up the pieces, move on and try to create a new life for yourself. If you have kids, you may have guilt about having an illness or believe that you are the cause of your family’s dismantling. 

Having chronic pain is like having a third person in the relationship. That “person” demands constant attention and spends many hours trying to get between the two of you, taking time away from you and your loved one.

However, if you are lucky enough to have that special someone who is capable and willing to deal with your chronic illness and truly understands and accepts, it might not mean the end of your relationship. Many people do stick with and endure the challenges of having an ill partner. It takes a very special person to be able to do that.

It’s good to have a few good friends who are supportive and understanding, rather than a bunch of people who say they are friends, but never step up to the plate. I’ve learned that family members who can’t be supportive have no place in my life. I believe it’s important to surround myself with positive people. Negative people can be emotionally draining and almost always are takers, rather than givers.

Those of us who have been abandoned must move on for our own emotional and physical well-being. As awful as it might seem at the time, it gives us the opportunity to meet new people who are able to give the love, support and compassion that we deserve.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.

Power of Pain: Changes in Family Dynamics

By Barby Ingle, Columnist

Chronic pain can be a lifelong situation that has a significant impact not only on the patient, but on family and friends as well. The condition may affect every aspect of the patient's life in varying degrees, including professional, social, and daily living activities. Everyone may have to make adjustments.

After health, patients are usually hit hardest by the financial aspects of the chronic disorder. Frequently, a leave of absence or early retirement from work is needed due to the inability to perform work-related tasks. Financial difficulties are acerbated by frequent visits to healthcare providers, medical-related expenses and unemployment.

To help reduce stress for everyone, it may be smart for the patient and their family to meet with a financial planner or insurance agent and devise a budget for future expenses.

With less money and mobility, there’s a tendency to give up favorite activities like hiking, sports, traveling, and participating in family events. Exercise becomes more difficult and everyday activities such as driving and shopping may need to be modified or given up.

Despite a wide range of treatment options available, a patient with chronic pain may not seek help and dismiss efforts by others.

Some reasons for this include fears of:

• Addiction to medications
• Lack of insurance coverage
• Not understanding insurance coverage
• Belief that nothing can help them
• Recurring pain will be worse
• Being seen as a "complainer"
• Side effects from treatments
• Tolerance to medications

It is important to discuss these concerns with family members, friends, physicians, or support service professionals (psychologist, social worker, etc.) in order to take advantage of options that are available and may actually lead to pain relief and improvement in the overall quality of life.

Planning is a key component to keeping stress levels down and a great way for family and friends to learn how they can help. Having the patient map out a plan of action for daily routines and responsibilities allows everyone to know when and where their help is needed and minimizes unexpected mishaps. Responsibilities that may need to be addressed include carpools, housework, cooking, holiday activities, laundry, leisure activities, jobs, pet care, planning meals, self-care, and shopping.

Pain patients should be encouraged to stay active, join a support group or seek psychological counseling if appropriate. Some patients find benefit in getting involved in volunteer work, which allows them to set their own hours and to feel they can contribute to others instead of just focusing on their own condition. Patients also be able counsel others with chronic pain.

Caregivers and friends can encourage the patient to do well and get treatments they are comfortable with. Find the balance between encouragement and pressure so the patient knows you love them and that no matter what they choose you will accept it.                                             

It can be difficult (or impossible) to imagine that someone can be in constant severe pain.  It's normal if you have not lived through it yourself. For a caregiver, it may be hard to stand by and accept that your loved one’s pain cannot be fixed or cured (although it may be eased). 

It may also be hard to accept that you cannot make it better. If you are in a close relationship with someone in chronic pain, you are likely to develop a variety of negative feelings like anger or resentment. This is a normal part of the process for both you and the loved one in pain. You are both victims of the pain problem.

Learn how to set the expectation as soon as you can as to what your needs are as a patient or caregiver, what progression the chronic illness is expected to take, what treatment options are available, and the best ways to communicate with each other what will make life easier for the patient, family and caregivers.

Turning to family and friends as caregivers and support outlets is important for everyone to have better daily living.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author, and president of the Power of Pain Foundation.

More information about Barby can be found by clicking here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.