Living With Chronic Pain

Featured in the September, 2013 Scleroderma, Vasculitis & Myositis eNewsletter

Everyone has experienced physical pain. Some levels of physical pain are unavoidable and necessary for survival. Pain sensations protect us from certain physical threats; an example is how the pain of touching something hot prevents us from becoming further burned because we immediately remove our hand. Pain symptoms can also be warning signs, alerting us that we have an illness or injury. Most pain experiences disappear when we heal. When injuries or illnesses are not easily healed or resolved, pain can become chronic, or persisting.

Often, even when treated with medication and other interventions, chronic pain does not entirely disappear. Without an immediate solution to pain relief, a patient’s goals will transition to pain management. Senior Social Worker II at Hospital for Special Surgery, Maris Pasquale Doran, LCSW, explains pain's influence and how patients with scleroderma, vasculitis, or myositis can best cope with it.


Living with chronic pain can be emotionally wearing, and learning how to redefine your life with pain as an unpredictable part of it can be an incredible challenge and burden. A patient diagnosed with scleroderma, vasculitis, or myositits, will have likely already experienced pain to some degree. Perhaps pain symptoms were the motivation behind seeking medical care. Though a patient’s diagnosis may be the same as others, specific symptoms, including the experience of pain, are unique.

No two individuals’ pain experiences will be exactly alike. There are many factors that can influence a person’s pain experience and response including:

  • age
  • gender
  • culture
  • ethnicity
  • spiritual beliefs
  • resources
  • emotional response
  • support systems
  • access to care
  • what life looked like before pain onset

If pain is a symptom of an illness, it can be helpful for a patient to reflect on his or her response to it and how his or her reaction is uniquely shaped, including the influence of family and culture.

Emotional Response to Chronic Pain

Chronic pain can impact many areas of life, as it is often accompanied by disability, changes in routine activities of daily living, job change or loss, limits in physical and recreational activities, sleep disturbance, and change in societal, social, and family role. Even when pain is brief, it may cause some of these effects in the short-term. These significant changes can cause an enormous amount of distress. With autoimmune illnesses, pain may feel more intense some days than others, and the body areas with pain symptoms may change. This unpredictability itself can be further distressing, as pain can potentially be very disruptive to a daily routine.

Given the challenge pain presents to everyday life, it is understandable that people in pain experience many varying emotions, often including:

  • depression
  • anxiety
  • anger
  • demoralization
  • feeling misunderstood

Being diagnosed with scleroderma, vasculitis, myositis or any other illness that may cause pain certainly does not mean the patient will become depressed or anxious. However, because of the difficulties of managing chronic illness and the pain that is often a symptom, a patient may be more likely to have one of these responses. We also know that many of these responses are interrelated to pain.

A cycle often exists, depicted below using pain, depression, and anxiety as the examples. These emotions influence each other, as does the pain. Even the way these emotions may manifest physically is relevant to pain. For example, anxious feelings often coincide with tightened muscles, and this physical reaction may further contribute to the pre-existing pain.

pain cycle


An awareness of this interrelationship can help the patient address both his or her emotions and pain. For example, a patient who believes he or she can control his or her life and continue to function, despite managing chronic pain, has been shown to have decreased depression. Engaging in mental health services to explore the influence of pain in their lives as well as their unique emotional responses can help patients cope. Professional, community, and family support may be necessary to help patients identify how to continue to feel in control over their lives and functioning.


Impact on Identity

Facing chronic pain often requires a patient to redefine himself or herself to an extent. The patient may have to learn new ways of completing tasks to stay engaged in life, from self-care to recreational activities. Not being able to pursue certain tasks or fulfill roles that were once routine can feel disempowering. In the midst of all of this change, the patient’s outward appearance may look much the same. Though it may seem that this lack of change in appearance is an advantage, it can also be isolating because a patient’s pain is invisible.

It can be a challenging and complex process for a patient to redefine his or her role in the context of culture, relationships, and social systems. A patient’s role in his or her family is a good example. Communication between family members can be altered when one member is experiencing chronic pain. Other family members may feel they should not “bother” the person with pain. Division of parental responsibilities or functions may change. Other shifts in family dynamics can include:

  • increased stress
  • financial burden
  • feelings of guilt and/or resentment
  • an impact on sexual relationships

Validating a family member’s pain experience while supporting his or her continued involvement in life can be a delicate and complicated challenge for other family members. Family therapy, or disease-specific support groups that include family members, may aid in communication surrounding these sensitive and highly personal topics.

Influence of the Medical System

Because pain is a subjectively measured experience, clear communication between the patient and medical team is essential. If, after treatment, the patient does not experience relief, he or she may feel that reporting pain to the medical team would be viewed as a complaint or like an exaggeration of symptoms. A patient should remember that he or she is a member of the medical team. Patient involvement is crucial to achieving relief, as open communication will aid the medical team to target best interventions.

Patient tips on communicating pain:

  • Keep a home journal. Writing pain symptoms down regularly can increase recall, since pain may change each day, and this tool may help the patient to be more descriptive and accurate.
  • Become familiar with common pain scales and learn how pain is measured medically.
  • Be as descriptive as possible in your account. Location, timing, and intensity of pain are highly informative details relevant to the care plan.
  • Using specific language to describe the type of pain, such as aching, burning, stabbing, piercing, throbbing, etc.

Coping with Pain

Pain, obviously unpleasant, can be incredibly disruptive to one’s life, but some ways of coping are more beneficial than others. Certain beliefs can be unhelpful, such as believing that pain is always sign of damage, that activity should be avoided, or that pain always leads to disability, is uncontrollable, or permanent.

Some tools can help patients understand their pain and maintain a sense of control over their lives, despite having an unpredictable pain condition:

  • Patient education materials
  • Disease specific support groups
  • Enhanced patient communication with their medical team

Patients should discuss any concerns or challenges they may have with their doctors to determine if pain is, in fact, a sign of damage. A patient’s physician will advise whether certain activities should be avoided, amended, or continued with the goal of helping the patient remain as active as possible The pain exists, but accepting its presence without allowing it to influence all areas of life is important.  Physical pain control does not affect a patient’s ability to function as much as that patient’s belief that he or she has control over his or her life.

A patient should share any beneficial coping methods with the medical team. Helpful methods may include:

  • Mindful meditation which has been shown to help decrease stress and pain by focusing the mind and increasing awareness of the present moment.
  • Yoga
  • Tai chi
  • Breathing exercises
  • Music
  • Spirituality has also been found to be a source of strength and coping for some.

The experience of pain and its impact are unique to each individual, as are the methods and tools that will help a patient cope. Becoming attuned to what is most beneficial is a process. Keeping a journal, involving family members, connecting with others who share a common diagnosis, and engaging in professional counseling may help a patient’s awareness of the pain’s influence and can help them determine best coping methods.


Some helpful websites may enhance knowledge and understanding of coping with pain:


Maris Pasquale Doran, LCSW 
Senior Social Worker II, Orthopedics Hospital for Special Surgery


In-person and virtual
physician appointments

Urgent Ortho Care

Same-day in-person or virtual appointments

Related Content